Introduction

[Guest guest]

Hi Kirk... You have found a wonderful support group and new family here. I wanted to welcome you. I am sorry that you have this disease.. It is effectionaly known as the "dragon" here. Please feel free to email me if you ever need to talk or vent.... That is what we are all here for.. We are a little wacky at times, but that helps. I have had the diagnoses for a year and a half, but was very sick for two years prior to being diagnosed. You will learn a lot here and you have a lot of people who know what you are going through. My email is Kelleyak31@... .....

Kelley in Colorado

[Guest guest]

Hi Kirk... You have found a wonderful support group and new family here. I wanted to welcome you. I am sorry that you have this disease.. It is effectionaly known as the "dragon" here. Please feel free to email me if you ever need to talk or vent.... That is what we are all here for.. We are a little wacky at times, but that helps. I have had the diagnoses for a year and a half, but was very sick for two years prior to being diagnosed. You will learn a lot here and you have a lot of people who know what you are going through. My email is Kelleyak31@... .....

Kelley in Colorado

[Guest guest]

Dear Kirk, If it makes you feel any better, my daughter gets horrible

headaches when she flares. They are 24/7, and we have been to lots of

specialists that don't do too much for them. Her rash has always itched,

and it is one of her main complaints. After five years all we have found to

help it is a strong antihistamine at night. She only takes it at night

because it makes her drowsy. Welcome to the group. (n, 15,

Still's)

Introduction

> I have recently been diagnosed with Stills and came across this

> group. I am part scared, part pissed (that I have it), rather

> depressed among other emotions. I am interested in learning all that

> I can about the disease to try to get a glimpse of the future anyway.

> My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily

> married with two outstanding sons ages 5 1/2 & 2 1/2. I live near

> Wilkes-Barre, Pennsylvania. I have been married for almost 8 years,

> and we dated for over 8 before that.

> I own (partner) and operate an auto repair facility and take a

> great deal of pride and satisfaction in my work. I have an

> Assosciates Degree in Automotive, ASE Master Certified Auto

> Technician credential among others. I have been a technician since

> 1987 in some degree or another.

> When I am not at work, I enjoy Tournament Bass Fishing, taking my

> kids fishing, spending time with friends, riding quads, lifting

> weights (At least I used to before this) and blowing my eardrums out

> while listening to Rock & Roll at, as my wife calls it, disgustingly

> loud levels. I have always been active, even hyper. I have played

> football, little league baseball, wrestled for 7 years, was in the

> National Guard (first as an 11B grunt and later as a tank mechanic).

> I have won countless straight pool tournaments (haven't played in a

> while, however) fished the Susquehanna River over 75 times a year

> since I was 11 or so. Since I married, I mainly only lifted weights

> (until I hurt myself doing far more than I ever should have) and fish

> in tournaments. I belong to a small, friendly club. I wish I could

> win more of these. Enough on that for now......

> I first wound up in the hospital with a 105.4 fever, severe

> chills, BRUTAL headache and other various symptoms two Saturdays

> before the Super Bowl. The ER geniuses sent me home after three or

> four hours when my fever came down.

> I wound up in there again 4 days later with the same symptoms, but

> worse and was admitted. I was there for 5 days and they thought that

> all I had was tonsilitus (spelling??). They told me to get my tonsils

> out after the cold and flu season. Tests performed were MRI, MRE, Cat

> Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood

> work than I ever dreamed possible.

> Two weeks to the day that I was released, I wound up in again,

> with all of the same symptoms except the serverly infected tonsils.

> They perfomed all of the same tests, except this time found high

> levels of inflamation. I had my primary phys, Neurologist, 2

> infecteous disease docs and now a RD. They mentioned Stills as a

> possibility along with a few other things. I remember that is when I

> first did some research on Stills and found the Stills Foundation

> site (I think I have the name right) and said to myself that I hope

> to hell they are wrong, I don't want this!. They put me on prsedinone

> and indicin.

> I felt good for about a week, than went to a hockey game with my

> wife. When the game was over,I could barely stand and had a real hard

> time walking. I couldn't bend my ankels, my knees hurt like hell and

> I felt like I pulled my groin. That lasted for 2 days, than went

> away. The day after my legs quit hurting, my head started pounding,

> mainly over one eye or the other. The first time this happened and

> lasted 4 days, I went to my doctor. They ordered more blood tests and

> they all showed nothing. My headache would go away and I would have

> joint pain, and this is still alternating to date.

> I went to Philadelphia to the University of Pennsylvania for a

> second opinion, and during the discussion with my doctor there had

> mentioned that my doctors here had mentioned Stills as a possibility.

> That caught his attention in a way that seems rather ominus now. He

> did some blood work and researched my medical records and was to get

> back to me in 4-5 days. He did not have to wait that long as I wound

> up back in the hospital last Sunday night.

> All of the same tests were performed, they gave me a new RD and

> Neurologist, consulted with ID and my doctor in Philly and all concur

> that what I have is Stills. I had my first rash on Thursday, and my

> left wrist has swollen up a few times. They kept me until yesterday,

> and I only hope not to wind up there again anytime soon.

> My ankles and knees burn when I am at rest, although the pain

> medication and presdinone do seem to be working. My legs generally

> don't bother me when I have weight on them. My wrist seems to hurt

> badly at times. I supposes I didn't notice all of this during the

> week because I was getting regular doses of delodid (spelling??) for

> the headaches I am getting.

> The month before my last admission was tough. I would have the

> headaches and joint pain, which in themselves was bad enough, but I

> would also itch so bad that I could not sleep at times, and I would

> literally scratch so hard and often that I bled. The itch mainly

> occurred at night, sometimes for a few nights in a row, than

> disappear. It happened again in the hospital on Tues,Weds,Thurs and a

> little on Friday. No one can explain the itch, as they say the

> steroids should be taking care of it. They also can't explain to me

> the headaches or the severity of them. My neurologist is writing them

> off as migraines, but I have had migraines before that have required

> hospitalization, and this is far worse than they were. To date imtrex

> has been tried without success along with one they have me on now,

> but the name eludes me at the moment.

> I guess I have rambled on enough for now. I hope I didn't offend

> anyone with anything I have written or implied, as this is not my

> intention. I am not in the best frame of mind at this time, as I

> would much rather to not have to deal with this. I guess my goal(s)

> here are to learn what I can from others, and to try get to a general

> idea of where my once enjoyable life is headed.

> Thanks for your time, Kirk. kbonanny@...

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

to replace the services of a trained health professional or to be a

substitute for medical advice of physicians and/or other health care

professionals. The International Still's Disease Foundation is not engaged

in rendering medical or professional medical services. You should consult

your physician on specific medical questions, particularly in matters

requiring diagnosis or medical attention. The International Still's Disease

Foundation makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any person

following the information offered or provided within this support form.

>

> ion by any person following the information offered or provided within

this support form.

>

>

>

[Guest guest]

Dear Kirk, If it makes you feel any better, my daughter gets horrible

headaches when she flares. They are 24/7, and we have been to lots of

specialists that don't do too much for them. Her rash has always itched,

and it is one of her main complaints. After five years all we have found to

help it is a strong antihistamine at night. She only takes it at night

because it makes her drowsy. Welcome to the group. (n, 15,

Still's)

Introduction

> I have recently been diagnosed with Stills and came across this

> group. I am part scared, part pissed (that I have it), rather

> depressed among other emotions. I am interested in learning all that

> I can about the disease to try to get a glimpse of the future anyway.

> My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily

> married with two outstanding sons ages 5 1/2 & 2 1/2. I live near

> Wilkes-Barre, Pennsylvania. I have been married for almost 8 years,

> and we dated for over 8 before that.

> I own (partner) and operate an auto repair facility and take a

> great deal of pride and satisfaction in my work. I have an

> Assosciates Degree in Automotive, ASE Master Certified Auto

> Technician credential among others. I have been a technician since

> 1987 in some degree or another.

> When I am not at work, I enjoy Tournament Bass Fishing, taking my

> kids fishing, spending time with friends, riding quads, lifting

> weights (At least I used to before this) and blowing my eardrums out

> while listening to Rock & Roll at, as my wife calls it, disgustingly

> loud levels. I have always been active, even hyper. I have played

> football, little league baseball, wrestled for 7 years, was in the

> National Guard (first as an 11B grunt and later as a tank mechanic).

> I have won countless straight pool tournaments (haven't played in a

> while, however) fished the Susquehanna River over 75 times a year

> since I was 11 or so. Since I married, I mainly only lifted weights

> (until I hurt myself doing far more than I ever should have) and fish

> in tournaments. I belong to a small, friendly club. I wish I could

> win more of these. Enough on that for now......

> I first wound up in the hospital with a 105.4 fever, severe

> chills, BRUTAL headache and other various symptoms two Saturdays

> before the Super Bowl. The ER geniuses sent me home after three or

> four hours when my fever came down.

> I wound up in there again 4 days later with the same symptoms, but

> worse and was admitted. I was there for 5 days and they thought that

> all I had was tonsilitus (spelling??). They told me to get my tonsils

> out after the cold and flu season. Tests performed were MRI, MRE, Cat

> Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood

> work than I ever dreamed possible.

> Two weeks to the day that I was released, I wound up in again,

> with all of the same symptoms except the serverly infected tonsils.

> They perfomed all of the same tests, except this time found high

> levels of inflamation. I had my primary phys, Neurologist, 2

> infecteous disease docs and now a RD. They mentioned Stills as a

> possibility along with a few other things. I remember that is when I

> first did some research on Stills and found the Stills Foundation

> site (I think I have the name right) and said to myself that I hope

> to hell they are wrong, I don't want this!. They put me on prsedinone

> and indicin.

> I felt good for about a week, than went to a hockey game with my

> wife. When the game was over,I could barely stand and had a real hard

> time walking. I couldn't bend my ankels, my knees hurt like hell and

> I felt like I pulled my groin. That lasted for 2 days, than went

> away. The day after my legs quit hurting, my head started pounding,

> mainly over one eye or the other. The first time this happened and

> lasted 4 days, I went to my doctor. They ordered more blood tests and

> they all showed nothing. My headache would go away and I would have

> joint pain, and this is still alternating to date.

> I went to Philadelphia to the University of Pennsylvania for a

> second opinion, and during the discussion with my doctor there had

> mentioned that my doctors here had mentioned Stills as a possibility.

> That caught his attention in a way that seems rather ominus now. He

> did some blood work and researched my medical records and was to get

> back to me in 4-5 days. He did not have to wait that long as I wound

> up back in the hospital last Sunday night.

> All of the same tests were performed, they gave me a new RD and

> Neurologist, consulted with ID and my doctor in Philly and all concur

> that what I have is Stills. I had my first rash on Thursday, and my

> left wrist has swollen up a few times. They kept me until yesterday,

> and I only hope not to wind up there again anytime soon.

> My ankles and knees burn when I am at rest, although the pain

> medication and presdinone do seem to be working. My legs generally

> don't bother me when I have weight on them. My wrist seems to hurt

> badly at times. I supposes I didn't notice all of this during the

> week because I was getting regular doses of delodid (spelling??) for

> the headaches I am getting.

> The month before my last admission was tough. I would have the

> headaches and joint pain, which in themselves was bad enough, but I

> would also itch so bad that I could not sleep at times, and I would

> literally scratch so hard and often that I bled. The itch mainly

> occurred at night, sometimes for a few nights in a row, than

> disappear. It happened again in the hospital on Tues,Weds,Thurs and a

> little on Friday. No one can explain the itch, as they say the

> steroids should be taking care of it. They also can't explain to me

> the headaches or the severity of them. My neurologist is writing them

> off as migraines, but I have had migraines before that have required

> hospitalization, and this is far worse than they were. To date imtrex

> has been tried without success along with one they have me on now,

> but the name eludes me at the moment.

> I guess I have rambled on enough for now. I hope I didn't offend

> anyone with anything I have written or implied, as this is not my

> intention. I am not in the best frame of mind at this time, as I

> would much rather to not have to deal with this. I guess my goal(s)

> here are to learn what I can from others, and to try get to a general

> idea of where my once enjoyable life is headed.

> Thanks for your time, Kirk. kbonanny@...

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

to replace the services of a trained health professional or to be a

substitute for medical advice of physicians and/or other health care

professionals. The International Still's Disease Foundation is not engaged

in rendering medical or professional medical services. You should consult

your physician on specific medical questions, particularly in matters

requiring diagnosis or medical attention. The International Still's Disease

Foundation makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any person

following the information offered or provided within this support form.

>

> ion by any person following the information offered or provided within

this support form.

>

>

>

[Guest guest]

Kirk first of all welcome to our little group,but sorry we had to meet on such circumstances.Most of the time as i have learned the onset of Stills is the hardest part to get over sorta think of it as a hurdle(this has been the case for me at least there are of course exceptions we all have different disease courses).Heh if you find anything for those headaches let me know,mine are better but still get what feels like a morning hangover all the fun without the booze lol.Of course i havent had the extreme headaches your talkin bout for awhile,but I do know how bad they can get.Geuss i shoulda introduced myself earlier lol,Im D been living with Stills since oct 2002.Im 31 soon to be 32 Cement Finisher by trade(which for almost full year could not do) Happy to say for last few months i have been goin fairly hard once again.I know it prob feels as if you will never get better but hang in there it can get better. Take care. d.Canada Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Kirk first of all welcome to our little group,but sorry we had to meet on such circumstances.Most of the time as i have learned the onset of Stills is the hardest part to get over sorta think of it as a hurdle(this has been the case for me at least there are of course exceptions we all have different disease courses).Heh if you find anything for those headaches let me know,mine are better but still get what feels like a morning hangover all the fun without the booze lol.Of course i havent had the extreme headaches your talkin bout for awhile,but I do know how bad they can get.Geuss i shoulda introduced myself earlier lol,Im D been living with Stills since oct 2002.Im 31 soon to be 32 Cement Finisher by trade(which for almost full year could not do) Happy to say for last few months i have been goin fairly hard once again.I know it prob feels as if you will never get better but hang in there it can get better. Take care. d.Canada Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Welcome Kirk;

I'm an old timer, as in Stills diagnosed since 1977. The first years for me

were very severe but once a medication cocktail that worked was found I was

blessed with many years of fun, work and life being very good. I'm not

saying it is easy but I want you to know it is not all bad. There are many

ups and downs but my life has been blessed in many ways and one of the

greatest was finding this group a couple of years ago. For many years I

knew no one with this disease. This group can be one of the finest families

you will ever know.

I too have had the headaches and take a daily dose of Neurontin.

Again, welcome and feel free to talk with us any time and get the support

that will make it so much easier.

We also have some wonderful brochures about the disease that are free for

the asking. If you would ever want any just say so and we can direct you to

the address information to get them.

Smiles for your day, Pattymelt

[Guest guest]

Welcome Kirk;

I'm an old timer, as in Stills diagnosed since 1977. The first years for me

were very severe but once a medication cocktail that worked was found I was

blessed with many years of fun, work and life being very good. I'm not

saying it is easy but I want you to know it is not all bad. There are many

ups and downs but my life has been blessed in many ways and one of the

greatest was finding this group a couple of years ago. For many years I

knew no one with this disease. This group can be one of the finest families

you will ever know.

I too have had the headaches and take a daily dose of Neurontin.

Again, welcome and feel free to talk with us any time and get the support

that will make it so much easier.

We also have some wonderful brochures about the disease that are free for

the asking. If you would ever want any just say so and we can direct you to

the address information to get them.

Smiles for your day, Pattymelt

[Guest guest]

Hi Kirk,

Welcome to this group support site! I am truly sorry that you found the need

to look for it, and yet at the same time happy for you that you have found us.

When I first got the Stills (back in the 70's) we didn't have the internet, but

also I was not properly diagnosed until 1987...then I *really* felt alone with

this strange rare thing called "Stills Disease."

16 years with the same person..that is great! You must be soulmates.

Two sons, that is wonderful! What are their names? Do you have pets?

It sounds as if you are used to leading a very busy and interesting life.

About the AOSD (Still's Disease) let's hope you are one of the many who

goes into a full and complete no med remission within the first 2 years, or

even a remission with meds might keep you from having to change things

in your life too much.

There are many meds though, and many doctors that do know what they

are doing when it comes to Stills. Hopefully your doctor will soon find the

med "cocktail that suits you best, and the "dragon" will loosen his grip.

from Wisconsin,

Tricia

-- Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...

[Guest guest]

Hi Kirk,

Welcome to this group support site! I am truly sorry that you found the need

to look for it, and yet at the same time happy for you that you have found us.

When I first got the Stills (back in the 70's) we didn't have the internet, but

also I was not properly diagnosed until 1987...then I *really* felt alone with

this strange rare thing called "Stills Disease."

16 years with the same person..that is great! You must be soulmates.

Two sons, that is wonderful! What are their names? Do you have pets?

It sounds as if you are used to leading a very busy and interesting life.

About the AOSD (Still's Disease) let's hope you are one of the many who

goes into a full and complete no med remission within the first 2 years, or

even a remission with meds might keep you from having to change things

in your life too much.

There are many meds though, and many doctors that do know what they

are doing when it comes to Stills. Hopefully your doctor will soon find the

med "cocktail that suits you best, and the "dragon" will loosen his grip.

from Wisconsin,

Tricia

-- Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...

[Guest guest]

Hello, Kirk, and welcome to our group. You are lucky to be aware of what is going on in your body. I suggest that you find a Rheumatologist that is familiar with Stills and maybe has a patient or two with it.

I am one of the older Stilligans, 62, and it took about four years before I was correctly diagnosed and that was only by going to Mayo Clinic as a last resort. My symptoms were very similar to yours.......swelling of the fingers, wrists, feet, ankles and knees and my muscle ached like crazy. I could hardly walk also like you. I would get a terrible sore throat too. The night sweats are amazing, aren't they? I finally learned to sleep on towels so I could just throw the sweaty ones on the floor and grab clean and dry ones all night long. I had towels under my head, around my neck, under my boobs, between my knees and also my ankles. Once you get this attack under control, your sweats just disappear. I would get fevers also and drank water like crazy. I lost weight as I had no desire to eat. That sure changed when I started taking Prednisone. I'll bet I gained twenty pounds but once off of it, I was back to normal. 223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive. I could eat and never stop....

I had a couple of complete remissions which were so fantastic that each time I thought I would never feel sick again and then.... BANG !! I'd get a huge flare and be back to step one. I have no idea why I get these flares. I am in one at the moment and I'm trying not to take any Prednisone as it's so hard to wean off it if you take it for a long time. It took me over a year to wean off 20mgs so I don't want to go through that again. But......!!!! it sure is a great drug, a two sided sword... (

I tried Vioxx...nope, Celebrex.....nope, Plaquenil.....nope, Remicade.....nope,........I went from drug to drug before I finally found this combination that worked for me. I take Enbrel twice a week and 12.5mgs of MTX. I didn't see any results for a little over four months but I kept on it as I had nothing else to try. Thank goodness it worked.

Some of us have been in remission for years now and that is what we all hope for.

Definitely, find a Rheumatologist that KNOWS about Stills !!!! Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you. You should slow down and take it easy also. I find that when I'm over active I flare. Have your PCP schedule an appointment at Mayo if you can't find a Rheumatologist that knows about Stills. Also, yes, we do have brochures that explain a lot about Stills. Very helpful to family, friends and even to doctors. Ask for some and we'll be able to send them to you.

Let us know your progress and keep those towels near you !!!! )

Ca. Carmen

Whoops!!! I'm back in Michigan now....

Mi. Carmen

[Guest guest]

Hello, Kirk, and welcome to our group. You are lucky to be aware of what is going on in your body. I suggest that you find a Rheumatologist that is familiar with Stills and maybe has a patient or two with it.

I am one of the older Stilligans, 62, and it took about four years before I was correctly diagnosed and that was only by going to Mayo Clinic as a last resort. My symptoms were very similar to yours.......swelling of the fingers, wrists, feet, ankles and knees and my muscle ached like crazy. I could hardly walk also like you. I would get a terrible sore throat too. The night sweats are amazing, aren't they? I finally learned to sleep on towels so I could just throw the sweaty ones on the floor and grab clean and dry ones all night long. I had towels under my head, around my neck, under my boobs, between my knees and also my ankles. Once you get this attack under control, your sweats just disappear. I would get fevers also and drank water like crazy. I lost weight as I had no desire to eat. That sure changed when I started taking Prednisone. I'll bet I gained twenty pounds but once off of it, I was back to normal. 223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive. I could eat and never stop....

I had a couple of complete remissions which were so fantastic that each time I thought I would never feel sick again and then.... BANG !! I'd get a huge flare and be back to step one. I have no idea why I get these flares. I am in one at the moment and I'm trying not to take any Prednisone as it's so hard to wean off it if you take it for a long time. It took me over a year to wean off 20mgs so I don't want to go through that again. But......!!!! it sure is a great drug, a two sided sword... (

I tried Vioxx...nope, Celebrex.....nope, Plaquenil.....nope, Remicade.....nope,........I went from drug to drug before I finally found this combination that worked for me. I take Enbrel twice a week and 12.5mgs of MTX. I didn't see any results for a little over four months but I kept on it as I had nothing else to try. Thank goodness it worked.

Some of us have been in remission for years now and that is what we all hope for.

Definitely, find a Rheumatologist that KNOWS about Stills !!!! Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you. You should slow down and take it easy also. I find that when I'm over active I flare. Have your PCP schedule an appointment at Mayo if you can't find a Rheumatologist that knows about Stills. Also, yes, we do have brochures that explain a lot about Stills. Very helpful to family, friends and even to doctors. Ask for some and we'll be able to send them to you.

Let us know your progress and keep those towels near you !!!! )

Ca. Carmen

Whoops!!! I'm back in Michigan now....

Mi. Carmen

[Guest guest]

Thanks for the replies, they all help a bit. I am attempting to go back to work tomorrow, mainly to try to take my mind off of this. I have been working in between hospital stays, as I really have little choice. I have worked way to hard for far to long to allow everything I've earned to "go away". I would sooner jump in front of a truck than allow that to happen. I like to think that I will be able to work to at least a semi-productive capacity without losing any time. I had only missed two days of work in my life to this point, and every day I have missed work I was in the hospital. My PCP wasn't/isn't exactly thrilled with this, but it isn't like I have the luxury to not work.

*****16 years with the same person..that is great! You must be soulmates.

Two sons, that is wonderful! What are their names? Do you have pets?

My wife and I do fit each other rather well, most of the time. She is everything I can ever have asked for. My sons are (5) and on (2). I have a head-case of a dog named Boomer.

*****It sounds as if you are used to leading a very busy and interesting life.

I have never been one to be accused of being lazy. I am accustomed to working 55-75 hours a week, and generally still being able to all of the other things that one in life needs to do to live. I have numerous hobbies, but with the exception of fishing they suffer since we had the kids. I have many true friends, and quite honestly have rarely been bored. Aside from losing the ability to provide for my family, this is my second biggest concern. I do not take to well to laying around at all, and have been getting rather violent towards others while in the hospital, through little or no fault of their own. As I told my mother in law, I owe my wife a bunch. She has been nothing but supportive, yet I have not been the nicest guy in the world to her as of late.

Once again, I would like to thank all that have replied. I am sure to be "active" here for the foreseeable future. I do have other questions, and will post them as soon as I figure out what I am looking for. Kirk Bonanny.

Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Thanks for the replies, they all help a bit. I am attempting to go back to work tomorrow, mainly to try to take my mind off of this. I have been working in between hospital stays, as I really have little choice. I have worked way to hard for far to long to allow everything I've earned to "go away". I would sooner jump in front of a truck than allow that to happen. I like to think that I will be able to work to at least a semi-productive capacity without losing any time. I had only missed two days of work in my life to this point, and every day I have missed work I was in the hospital. My PCP wasn't/isn't exactly thrilled with this, but it isn't like I have the luxury to not work.

*****16 years with the same person..that is great! You must be soulmates.

Two sons, that is wonderful! What are their names? Do you have pets?

My wife and I do fit each other rather well, most of the time. She is everything I can ever have asked for. My sons are (5) and on (2). I have a head-case of a dog named Boomer.

*****It sounds as if you are used to leading a very busy and interesting life.

I have never been one to be accused of being lazy. I am accustomed to working 55-75 hours a week, and generally still being able to all of the other things that one in life needs to do to live. I have numerous hobbies, but with the exception of fishing they suffer since we had the kids. I have many true friends, and quite honestly have rarely been bored. Aside from losing the ability to provide for my family, this is my second biggest concern. I do not take to well to laying around at all, and have been getting rather violent towards others while in the hospital, through little or no fault of their own. As I told my mother in law, I owe my wife a bunch. She has been nothing but supportive, yet I have not been the nicest guy in the world to her as of late.

Once again, I would like to thank all that have replied. I am sure to be "active" here for the foreseeable future. I do have other questions, and will post them as soon as I figure out what I am looking for. Kirk Bonanny.

Introduction

I have recently been diagnosed with Stills and came across this group. I am part scared, part pissed (that I have it), rather depressed among other emotions. I am interested in learning all that I can about the disease to try to get a glimpse of the future anyway. My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily married with two outstanding sons ages 5 1/2 & 2 1/2. I live near Wilkes-Barre, Pennsylvania. I have been married for almost 8 years, and we dated for over 8 before that. I own (partner) and operate an auto repair facility and take a great deal of pride and satisfaction in my work. I have an Assosciates Degree in Automotive, ASE Master Certified Auto Technician credential among others. I have been a technician since 1987 in some degree or another. When I am not at work, I enjoy Tournament Bass Fishing, taking my kids fishing, spending time with friends, riding quads, lifting weights (At least I used to before this) and blowing my eardrums out while listening to Rock & Roll at, as my wife calls it, disgustingly loud levels. I have always been active, even hyper. I have played football, little league baseball, wrestled for 7 years, was in the National Guard (first as an 11B grunt and later as a tank mechanic). I have won countless straight pool tournaments (haven't played in a while, however) fished the Susquehanna River over 75 times a year since I was 11 or so. Since I married, I mainly only lifted weights (until I hurt myself doing far more than I ever should have) and fish in tournaments. I belong to a small, friendly club. I wish I could win more of these. Enough on that for now...... I first wound up in the hospital with a 105.4 fever, severe chills, BRUTAL headache and other various symptoms two Saturdays before the Super Bowl. The ER geniuses sent me home after three or four hours when my fever came down. I wound up in there again 4 days later with the same symptoms, but worse and was admitted. I was there for 5 days and they thought that all I had was tonsilitus (spelling??). They told me to get my tonsils out after the cold and flu season. Tests performed were MRI, MRE, Cat Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood work than I ever dreamed possible. Two weeks to the day that I was released, I wound up in again, with all of the same symptoms except the serverly infected tonsils. They perfomed all of the same tests, except this time found high levels of inflamation. I had my primary phys, Neurologist, 2 infecteous disease docs and now a RD. They mentioned Stills as a possibility along with a few other things. I remember that is when I first did some research on Stills and found the Stills Foundation site (I think I have the name right) and said to myself that I hope to hell they are wrong, I don't want this!. They put me on prsedinone and indicin. I felt good for about a week, than went to a hockey game with my wife. When the game was over,I could barely stand and had a real hard time walking. I couldn't bend my ankels, my knees hurt like hell and I felt like I pulled my groin. That lasted for 2 days, than went away. The day after my legs quit hurting, my head started pounding, mainly over one eye or the other. The first time this happened and lasted 4 days, I went to my doctor. They ordered more blood tests and they all showed nothing. My headache would go away and I would have joint pain, and this is still alternating to date. I went to Philadelphia to the University of Pennsylvania for a second opinion, and during the discussion with my doctor there had mentioned that my doctors here had mentioned Stills as a possibility. That caught his attention in a way that seems rather ominus now. He did some blood work and researched my medical records and was to get back to me in 4-5 days. He did not have to wait that long as I wound up back in the hospital last Sunday night. All of the same tests were performed, they gave me a new RD and Neurologist, consulted with ID and my doctor in Philly and all concur that what I have is Stills. I had my first rash on Thursday, and my left wrist has swollen up a few times. They kept me until yesterday, and I only hope not to wind up there again anytime soon. My ankles and knees burn when I am at rest, although the pain medication and presdinone do seem to be working. My legs generally don't bother me when I have weight on them. My wrist seems to hurt badly at times. I supposes I didn't notice all of this during the week because I was getting regular doses of delodid (spelling??) for the headaches I am getting. The month before my last admission was tough. I would have the headaches and joint pain, which in themselves was bad enough, but I would also itch so bad that I could not sleep at times, and I would literally scratch so hard and often that I bled. The itch mainly occurred at night, sometimes for a few nights in a row, than disappear. It happened again in the hospital on Tues,Weds,Thurs and a little on Friday. No one can explain the itch, as they say the steroids should be taking care of it. They also can't explain to me the headaches or the severity of them. My neurologist is writing them off as migraines, but I have had migraines before that have required hospitalization, and this is far worse than they were. To date imtrex has been tried without success along with one they have me on now, but the name eludes me at the moment. I guess I have rambled on enough for now. I hope I didn't offend anyone with anything I have written or implied, as this is not my intention. I am not in the best frame of mind at this time, as I would much rather to not have to deal with this. I guess my goal(s) here are to learn what I can from others, and to try get to a general idea of where my once enjoyable life is headed. Thanks for your time, Kirk. kbonanny@...

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

They gave me Benedryl 50mg that do seem to help with the itch, but time will tell, and I hope it does. It is hard to function on 2-3 hours of sleep per night.

I have been fortunate (I suppose) in that I have not had the rash that often. I don't know if that is how it is going to be or if the worse is yet to come.

***** After five years all we have found tohelp it is a strong antihistamine at night.

Five years? Has there been any improvement for her? God, I don't think I can handle it that long.

Introduction> I have recently been diagnosed with Stills and came across this> group. I am part scared, part pissed (that I have it), rather> depressed among other emotions. I am interested in learning all that> I can about the disease to try to get a glimpse of the future anyway.> My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily> married with two outstanding sons ages 5 1/2 & 2 1/2. I live near> Wilkes-Barre, Pennsylvania. I have been married for almost 8 years,> and we dated for over 8 before that.> I own (partner) and operate an auto repair facility and take a> great deal of pride and satisfaction in my work. I have an> Assosciates Degree in Automotive, ASE Master Certified Auto> Technician credential among others. I have been a technician since> 1987 in some degree or another.> When I am not at work, I enjoy Tournament Bass Fishing, taking my> kids fishing, spending time with friends, riding quads, lifting> weights (At least I used to before this) and blowing my eardrums out> while listening to Rock & Roll at, as my wife calls it, disgustingly> loud levels. I have always been active, even hyper. I have played> football, little league baseball, wrestled for 7 years, was in the> National Guard (first as an 11B grunt and later as a tank mechanic).> I have won countless straight pool tournaments (haven't played in a> while, however) fished the Susquehanna River over 75 times a year> since I was 11 or so. Since I married, I mainly only lifted weights> (until I hurt myself doing far more than I ever should have) and fish> in tournaments. I belong to a small, friendly club. I wish I could> win more of these. Enough on that for now......> I first wound up in the hospital with a 105.4 fever, severe> chills, BRUTAL headache and other various symptoms two Saturdays> before the Super Bowl. The ER geniuses sent me home after three or> four hours when my fever came down.> I wound up in there again 4 days later with the same symptoms, but> worse and was admitted. I was there for 5 days and they thought that> all I had was tonsilitus (spelling??). They told me to get my tonsils> out after the cold and flu season. Tests performed were MRI, MRE, Cat> Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood> work than I ever dreamed possible.> Two weeks to the day that I was released, I wound up in again,> with all of the same symptoms except the serverly infected tonsils.> They perfomed all of the same tests, except this time found high> levels of inflamation. I had my primary phys, Neurologist, 2> infecteous disease docs and now a RD. They mentioned Stills as a> possibility along with a few other things. I remember that is when I> first did some research on Stills and found the Stills Foundation> site (I think I have the name right) and said to myself that I hope> to hell they are wrong, I don't want this!. They put me on prsedinone> and indicin.> I felt good for about a week, than went to a hockey game with my> wife. When the game was over,I could barely stand and had a real hard> time walking. I couldn't bend my ankels, my knees hurt like hell and> I felt like I pulled my groin. That lasted for 2 days, than went> away. The day after my legs quit hurting, my head started pounding,> mainly over one eye or the other. The first time this happened and> lasted 4 days, I went to my doctor. They ordered more blood tests and> they all showed nothing. My headache would go away and I would have> joint pain, and this is still alternating to date.> I went to Philadelphia to the University of Pennsylvania for a> second opinion, and during the discussion with my doctor there had> mentioned that my doctors here had mentioned Stills as a possibility.> That caught his attention in a way that seems rather ominus now. He> did some blood work and researched my medical records and was to get> back to me in 4-5 days. He did not have to wait that long as I wound> up back in the hospital last Sunday night.> All of the same tests were performed, they gave me a new RD and> Neurologist, consulted with ID and my doctor in Philly and all concur> that what I have is Stills. I had my first rash on Thursday, and my> left wrist has swollen up a few times. They kept me until yesterday,> and I only hope not to wind up there again anytime soon.> My ankles and knees burn when I am at rest, although the pain> medication and presdinone do seem to be working. My legs generally> don't bother me when I have weight on them. My wrist seems to hurt> badly at times. I supposes I didn't notice all of this during the> week because I was getting regular doses of delodid (spelling??) for> the headaches I am getting.> The month before my last admission was tough. I would have the> headaches and joint pain, which in themselves was bad enough, but I> would also itch so bad that I could not sleep at times, and I would> literally scratch so hard and often that I bled. The itch mainly> occurred at night, sometimes for a few nights in a row, than> disappear. It happened again in the hospital on Tues,Weds,Thurs and a> little on Friday. No one can explain the itch, as they say the> steroids should be taking care of it. They also can't explain to me> the headaches or the severity of them. My neurologist is writing them> off as migraines, but I have had migraines before that have required> hospitalization, and this is far worse than they were. To date imtrex> has been tried without success along with one they have me on now,> but the name eludes me at the moment.> I guess I have rambled on enough for now. I hope I didn't offend> anyone with anything I have written or implied, as this is not my> intention. I am not in the best frame of mind at this time, as I> would much rather to not have to deal with this. I guess my goal(s)> here are to learn what I can from others, and to try get to a general> idea of where my once enjoyable life is headed.> Thanks for your time, Kirk. kbonanny@...>>>>> Visit the Still's Disease Message Board> http://disc.server.com/Indices/148599.html>> The materials and information contained in this message are not intendedto replace the services of a trained health professional or to be asubstitute for medical advice of physicians and/or other health careprofessionals. The International Still's Disease Foundation is not engagedin rendering medical or professional medical services. You should consultyour physician on specific medical questions, particularly in mattersrequiring diagnosis or medical attention. The International Still's DiseaseFoundation makes no representations or warranties with respect to anytreatment, action, application, medication or preparation by any personfollowing the information offered or provided within this support form.>> ion by any person following the information offered or provided withinthis support form.>>>

[Guest guest]

They gave me Benedryl 50mg that do seem to help with the itch, but time will tell, and I hope it does. It is hard to function on 2-3 hours of sleep per night.

I have been fortunate (I suppose) in that I have not had the rash that often. I don't know if that is how it is going to be or if the worse is yet to come.

***** After five years all we have found tohelp it is a strong antihistamine at night.

Five years? Has there been any improvement for her? God, I don't think I can handle it that long.

Introduction> I have recently been diagnosed with Stills and came across this> group. I am part scared, part pissed (that I have it), rather> depressed among other emotions. I am interested in learning all that> I can about the disease to try to get a glimpse of the future anyway.> My name is Kirk B. I was born 03/03/1971 (33 yr old). I am happily> married with two outstanding sons ages 5 1/2 & 2 1/2. I live near> Wilkes-Barre, Pennsylvania. I have been married for almost 8 years,> and we dated for over 8 before that.> I own (partner) and operate an auto repair facility and take a> great deal of pride and satisfaction in my work. I have an> Assosciates Degree in Automotive, ASE Master Certified Auto> Technician credential among others. I have been a technician since> 1987 in some degree or another.> When I am not at work, I enjoy Tournament Bass Fishing, taking my> kids fishing, spending time with friends, riding quads, lifting> weights (At least I used to before this) and blowing my eardrums out> while listening to Rock & Roll at, as my wife calls it, disgustingly> loud levels. I have always been active, even hyper. I have played> football, little league baseball, wrestled for 7 years, was in the> National Guard (first as an 11B grunt and later as a tank mechanic).> I have won countless straight pool tournaments (haven't played in a> while, however) fished the Susquehanna River over 75 times a year> since I was 11 or so. Since I married, I mainly only lifted weights> (until I hurt myself doing far more than I ever should have) and fish> in tournaments. I belong to a small, friendly club. I wish I could> win more of these. Enough on that for now......> I first wound up in the hospital with a 105.4 fever, severe> chills, BRUTAL headache and other various symptoms two Saturdays> before the Super Bowl. The ER geniuses sent me home after three or> four hours when my fever came down.> I wound up in there again 4 days later with the same symptoms, but> worse and was admitted. I was there for 5 days and they thought that> all I had was tonsilitus (spelling??). They told me to get my tonsils> out after the cold and flu season. Tests performed were MRI, MRE, Cat> Scan, Cat Scan with iodine (contrast), numerous x-rays and more blood> work than I ever dreamed possible.> Two weeks to the day that I was released, I wound up in again,> with all of the same symptoms except the serverly infected tonsils.> They perfomed all of the same tests, except this time found high> levels of inflamation. I had my primary phys, Neurologist, 2> infecteous disease docs and now a RD. They mentioned Stills as a> possibility along with a few other things. I remember that is when I> first did some research on Stills and found the Stills Foundation> site (I think I have the name right) and said to myself that I hope> to hell they are wrong, I don't want this!. They put me on prsedinone> and indicin.> I felt good for about a week, than went to a hockey game with my> wife. When the game was over,I could barely stand and had a real hard> time walking. I couldn't bend my ankels, my knees hurt like hell and> I felt like I pulled my groin. That lasted for 2 days, than went> away. The day after my legs quit hurting, my head started pounding,> mainly over one eye or the other. The first time this happened and> lasted 4 days, I went to my doctor. They ordered more blood tests and> they all showed nothing. My headache would go away and I would have> joint pain, and this is still alternating to date.> I went to Philadelphia to the University of Pennsylvania for a> second opinion, and during the discussion with my doctor there had> mentioned that my doctors here had mentioned Stills as a possibility.> That caught his attention in a way that seems rather ominus now. He> did some blood work and researched my medical records and was to get> back to me in 4-5 days. He did not have to wait that long as I wound> up back in the hospital last Sunday night.> All of the same tests were performed, they gave me a new RD and> Neurologist, consulted with ID and my doctor in Philly and all concur> that what I have is Stills. I had my first rash on Thursday, and my> left wrist has swollen up a few times. They kept me until yesterday,> and I only hope not to wind up there again anytime soon.> My ankles and knees burn when I am at rest, although the pain> medication and presdinone do seem to be working. My legs generally> don't bother me when I have weight on them. My wrist seems to hurt> badly at times. I supposes I didn't notice all of this during the> week because I was getting regular doses of delodid (spelling??) for> the headaches I am getting.> The month before my last admission was tough. I would have the> headaches and joint pain, which in themselves was bad enough, but I> would also itch so bad that I could not sleep at times, and I would> literally scratch so hard and often that I bled. The itch mainly> occurred at night, sometimes for a few nights in a row, than> disappear. It happened again in the hospital on Tues,Weds,Thurs and a> little on Friday. No one can explain the itch, as they say the> steroids should be taking care of it. They also can't explain to me> the headaches or the severity of them. My neurologist is writing them> off as migraines, but I have had migraines before that have required> hospitalization, and this is far worse than they were. To date imtrex> has been tried without success along with one they have me on now,> but the name eludes me at the moment.> I guess I have rambled on enough for now. I hope I didn't offend> anyone with anything I have written or implied, as this is not my> intention. I am not in the best frame of mind at this time, as I> would much rather to not have to deal with this. I guess my goal(s)> here are to learn what I can from others, and to try get to a general> idea of where my once enjoyable life is headed.> Thanks for your time, Kirk. kbonanny@...>>>>> Visit the Still's Disease Message Board> http://disc.server.com/Indices/148599.html>> The materials and information contained in this message are not intendedto replace the services of a trained health professional or to be asubstitute for medical advice of physicians and/or other health careprofessionals. The International Still's Disease Foundation is not engagedin rendering medical or professional medical services. You should consultyour physician on specific medical questions, particularly in mattersrequiring diagnosis or medical attention. The International Still's DiseaseFoundation makes no representations or warranties with respect to anytreatment, action, application, medication or preparation by any personfollowing the information offered or provided within this support form.>> ion by any person following the information offered or provided withinthis support form.>>>

[Guest guest]

Thanks for the reply. I can fill in some information now, and some at a later date.

223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive.

I am not sure if it does or not. When I joined the Army, they stated I should weigh 145. Well I went into boot camp at 194, was on their so called "fat-boy" diet (until I scored among the highest in the first PT test) and walked out of there @ 198 (1990). I was consistently around 205 for years with 8 to 12% body fat.I was up to 232 after the birth of our first son (1998) (it is amazing how fast one can get "out of shape" by sitting aroung drinking beer watching tv) and re- joined a gym less than 5 months of his birth. I did a lot of running and light exercise to get down to 208. I then started back into powerlifting, and was up as high as 225 lean, solid pounds before I hurt my shoulders late in 2002. I quit lifting altogether in May of 2003 when I decided to not renew my gym membership. I have been hanging around 210 since, until this bastard of a disease hit. For the record, I have never done any performance enhancing drugs to date. It is ironic to me that someone as anti- steroid as me is now on them, albeit for a totally different reason.

*****Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you.

I do believe I have a copy of my first two visits to the hospital record wise, as I needed them to take to Philly for a second opinion. I will try to remember to get them from my wife and post the findings. I am also trying to rough out a draft for my history on the Foundation page.

On a final note, I would like some brochures. I will email you off list with my address. Thanks!

Re: Introduction

Hello, Kirk, and welcome to our group. You are lucky to be aware of what is going on in your body. I suggest that you find a Rheumatologist that is familiar with Stills and maybe has a patient or two with it.

I am one of the older Stilligans, 62, and it took about four years before I was correctly diagnosed and that was only by going to Mayo Clinic as a last resort. My symptoms were very similar to yours.......swelling of the fingers, wrists, feet, ankles and knees and my muscle ached like crazy. I could hardly walk also like you. I would get a terrible sore throat too. The night sweats are amazing, aren't they? I finally learned to sleep on towels so I could just throw the sweaty ones on the floor and grab clean and dry ones all night long. I had towels under my head, around my neck, under my boobs, between my knees and also my ankles. Once you get this attack under control, your sweats just disappear. I would get fevers also and drank water like crazy. I lost weight as I had no desire to eat. That sure changed when I started taking Prednisone. I'll bet I gained twenty pounds but once off of it, I was back to normal. 223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive. I could eat and never stop....

I had a couple of complete remissions which were so fantastic that each time I thought I would never feel sick again and then.... BANG !! I'd get a huge flare and be back to step one. I have no idea why I get these flares. I am in one at the moment and I'm trying not to take any Prednisone as it's so hard to wean off it if you take it for a long time. It took me over a year to wean off 20mgs so I don't want to go through that again. But......!!!! it sure is a great drug, a two sided sword... (

I tried Vioxx...nope, Celebrex.....nope, Plaquenil.....nope, Remicade.....nope,........I went from drug to drug before I finally found this combination that worked for me. I take Enbrel twice a week and 12.5mgs of MTX. I didn't see any results for a little over four months but I kept on it as I had nothing else to try. Thank goodness it worked.

Some of us have been in remission for years now and that is what we all hope for.

Definitely, find a Rheumatologist that KNOWS about Stills !!!! Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you. You should slow down and take it easy also. I find that when I'm over active I flare. Have your PCP schedule an appointment at Mayo if you can't find a Rheumatologist that knows about Stills. Whoops!!! I'm back in Michigan now....

Mi. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Thanks for the reply. I can fill in some information now, and some at a later date.

223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive.

I am not sure if it does or not. When I joined the Army, they stated I should weigh 145. Well I went into boot camp at 194, was on their so called "fat-boy" diet (until I scored among the highest in the first PT test) and walked out of there @ 198 (1990). I was consistently around 205 for years with 8 to 12% body fat.I was up to 232 after the birth of our first son (1998) (it is amazing how fast one can get "out of shape" by sitting aroung drinking beer watching tv) and re- joined a gym less than 5 months of his birth. I did a lot of running and light exercise to get down to 208. I then started back into powerlifting, and was up as high as 225 lean, solid pounds before I hurt my shoulders late in 2002. I quit lifting altogether in May of 2003 when I decided to not renew my gym membership. I have been hanging around 210 since, until this bastard of a disease hit. For the record, I have never done any performance enhancing drugs to date. It is ironic to me that someone as anti- steroid as me is now on them, albeit for a totally different reason.

*****Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you.

I do believe I have a copy of my first two visits to the hospital record wise, as I needed them to take to Philly for a second opinion. I will try to remember to get them from my wife and post the findings. I am also trying to rough out a draft for my history on the Foundation page.

On a final note, I would like some brochures. I will email you off list with my address. Thanks!

Re: Introduction

Hello, Kirk, and welcome to our group. You are lucky to be aware of what is going on in your body. I suggest that you find a Rheumatologist that is familiar with Stills and maybe has a patient or two with it.

I am one of the older Stilligans, 62, and it took about four years before I was correctly diagnosed and that was only by going to Mayo Clinic as a last resort. My symptoms were very similar to yours.......swelling of the fingers, wrists, feet, ankles and knees and my muscle ached like crazy. I could hardly walk also like you. I would get a terrible sore throat too. The night sweats are amazing, aren't they? I finally learned to sleep on towels so I could just throw the sweaty ones on the floor and grab clean and dry ones all night long. I had towels under my head, around my neck, under my boobs, between my knees and also my ankles. Once you get this attack under control, your sweats just disappear. I would get fevers also and drank water like crazy. I lost weight as I had no desire to eat. That sure changed when I started taking Prednisone. I'll bet I gained twenty pounds but once off of it, I was back to normal. 223 lbs. is quite a lot for your height. Your added weight probably makes your joints more sensitive. I could eat and never stop....

I had a couple of complete remissions which were so fantastic that each time I thought I would never feel sick again and then.... BANG !! I'd get a huge flare and be back to step one. I have no idea why I get these flares. I am in one at the moment and I'm trying not to take any Prednisone as it's so hard to wean off it if you take it for a long time. It took me over a year to wean off 20mgs so I don't want to go through that again. But......!!!! it sure is a great drug, a two sided sword... (

I tried Vioxx...nope, Celebrex.....nope, Plaquenil.....nope, Remicade.....nope,........I went from drug to drug before I finally found this combination that worked for me. I take Enbrel twice a week and 12.5mgs of MTX. I didn't see any results for a little over four months but I kept on it as I had nothing else to try. Thank goodness it worked.

Some of us have been in remission for years now and that is what we all hope for.

Definitely, find a Rheumatologist that KNOWS about Stills !!!! Oh...is your Sed rate high? That's a sure sign of Stills, at least it was for me.

The sooner you start on some kind of a treatment, the better. You don't want to have knee or shoulder replacements because your doctor didn't Rx medications to help you. You should slow down and take it easy also. I find that when I'm over active I flare. Have your PCP schedule an appointment at Mayo if you can't find a Rheumatologist that knows about Stills. Whoops!!! I'm back in Michigan now....

Mi. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hello Kirk B.

Welcome to our group.

I like how you reference time. Oh the two weeks before superbowl

thing. I can relate to that kind of associating time and dates. I

hope that those White Coats you are dealing with hurry up and get you

on some medicines to treat this old crap. I remember with mine that

it seemed like they maybe enjoyed seeing me suffer more while they

tried to make up their minds what was going on. I realize now that

they was just going through all the old troubleshooting stuff get me

all figured out. I got whacked big time by this Stills stuff oh

around 2 1/2 years ago. The Rheumey White Coat got down serious

with treatment around 2 year ago. I am somewhere close to feeling

good now. Actually am decreasing off some of the medicines. One of

those keeping the fingers crossed (yes can do that again) that it

will all work out.

I am the real serious guy from Montana. My name is Dan. You do not

want to believe all of the wild stories that some in this group will

tell about me.

Anyway I do want to welcome you to this group. I wish like heck that

you did not have this old Stills crap, but you are in good company

here.

Dan

B.S.

(Tricia you know that stands for Big Sky, quit telling people it

means something else)

> I have recently been diagnosed with Stills and came across this

> group. I am part scared, part pissed (that I have it), rather

> depressed among other emotions. I am interested in learning all

that

> I can about the disease to try to get a glimpse of the future

anyway.

> My name is Kirk B. I was born 03/03/1971 (33 yr old).

[Guest guest]

Hello Kirk B.

Welcome to our group.

I like how you reference time. Oh the two weeks before superbowl

thing. I can relate to that kind of associating time and dates. I

hope that those White Coats you are dealing with hurry up and get you

on some medicines to treat this old crap. I remember with mine that

it seemed like they maybe enjoyed seeing me suffer more while they

tried to make up their minds what was going on. I realize now that

they was just going through all the old troubleshooting stuff get me

all figured out. I got whacked big time by this Stills stuff oh

around 2 1/2 years ago. The Rheumey White Coat got down serious

with treatment around 2 year ago. I am somewhere close to feeling

good now. Actually am decreasing off some of the medicines. One of

those keeping the fingers crossed (yes can do that again) that it

will all work out.

I am the real serious guy from Montana. My name is Dan. You do not

want to believe all of the wild stories that some in this group will

tell about me.

Anyway I do want to welcome you to this group. I wish like heck that

you did not have this old Stills crap, but you are in good company

here.

Dan

B.S.

(Tricia you know that stands for Big Sky, quit telling people it

means something else)

> I have recently been diagnosed with Stills and came across this

> group. I am part scared, part pissed (that I have it), rather

> depressed among other emotions. I am interested in learning all

that

> I can about the disease to try to get a glimpse of the future

anyway.

> My name is Kirk B. I was born 03/03/1971 (33 yr old).

[Guest guest]

Dan

B.S.

It means Big Sky????????????? I believed Tricia!!!

Mi. Carmen

[Guest guest]

Dan

B.S.

It means Big Sky????????????? I believed Tricia!!!

Mi. Carmen

[Guest guest]

Hi Everyone,

I'm new to the group. I've been lurking for a while now.

I'm currently married, children just animals cats and dogs.

I'm 46 now I have been ill most of my life with some type of illness or surgeries, blood poisining.

I have been dx with SLE Lupus, Fibromyalia, Parkinsonism, Monocular Degeneration of both eyes due to Medication Plaqenil (sp), Carpel Tunnel have to wear braces on both hands, back, hips, joint problems, as well as Arthritis in the hands, feet mostly,Mono at the present time as well as a flare going on, a few other things as well.

I have to wear dark eye glasses and hats to cover my face plus put on a 45 factor Sun Block. Even then I get rashes at times. So, try to do most things at night or after 2:00p.m. for DR appointments. or later.

I just saw a new PCP and she is going to be sending me to another specialist. I have lost to much weight in the last few months and finally got a DR who is listening to me with all the different types Cancer that runs in the family.

I also had to see the eye specialist yesterday and things are not looking very well in that department either. I go back in two weeks to get the photo's taken of the eyes and find out what he is going to do or not do. The assistant said I had three things going on right now with my eyes. I'm very upset about this news as well as see another specialist in a few months.

That's it for now. I'll catch you later. Take care of yourselves as best as you can. Try to have a pain free day ;^)

Great Big Soft Angel Hugs!!!

Vicki from Central CA. U.S.A.

[Guest guest]

Welcome Vicki;

I wish you the best outcome for your eyes. I know it seems that things just add up with this disease but you are welcome as a new family member and we hope to know you more in the future.

Smiles and hugs back for your day, pattymelt

Re: Introduction

Hi Everyone,

I'm new to the group. I've been lurking for a while now.

I'm 46 now I have been ill most of my life with some type of illness or surgeries, blood poisining.

I also had to see the eye specialist yesterday and things are not looking very well in that department either. I go back in two weeks to get the photo's taken of the eyes and find out what he is going to do or not do. Vicki from Central CA. U.S.A.Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Welcome Vicki

Re: Introduction

Hi Everyone,

I'm new to the group. I've been lurking for a while now.

I'm currently married, children just animals cats and dogs.

I'm 46 now I have been ill most of my life with some type of illness or surgeries, blood poisining.

I have been dx with SLE Lupus, Fibromyalia, Parkinsonism, Monocular Degeneration of both eyes due to Medication Plaqenil (sp), Carpel Tunnel have to wear braces on both hands, back, hips, joint problems, as well as Arthritis in the hands, feet mostly,Mono at the present time as well as a flare going on, a few other things as well.

I have to wear dark eye glasses and hats to cover my face plus put on a 45 factor Sun Block. Even then I get rashes at times. So, try to do most things at night or after 2:00p.m. for DR appointments. or later.

I just saw a new PCP and she is going to be sending me to another specialist. I have lost to much weight in the last few months and finally got a DR who is listening to me with all the different types Cancer that runs in the family.

I also had to see the eye specialist yesterday and things are not looking very well in that department either. I go back in two weeks to get the photo's taken of the eyes and find out what he is going to do or not do. The assistant said I had three things going on right now with my eyes. I'm very upset about this news as well as see another specialist in a few months.

That's it for now. I'll catch you later. Take care of yourselves as best as you can. Try to have a pain free day ;^)

Great Big Soft Angel Hugs!!!

Vicki from Central CA. U.S.A.Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.