Re: More frustration

[Guest guest]

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Are you on an antidepressant? Even though I've lowered my pred from 30 to 15mg recently, my emotions are ridiculous so I increased zoloft tonight. I'm tired of crying about everything. I think the cause for me is the pred, at least that's what I'm thinking anyhow. Just a thought, if we're going to be hurting we don't have to be so darned stressed about it! Makes life a bit easier!

[Guest guest]

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Are you on an antidepressant? Even though I've lowered my pred from 30 to 15mg recently, my emotions are ridiculous so I increased zoloft tonight. I'm tired of crying about everything. I think the cause for me is the pred, at least that's what I'm thinking anyhow. Just a thought, if we're going to be hurting we don't have to be so darned stressed about it! Makes life a bit easier!

[Guest guest]

Hi Kirk.. I feel your frustrations. I too get the headaches. I have been to neurologists and such for them even tho they say migrains, which at times they are. They never really gave me anything for them. My PCP however, put me on Topomax (sp) I take 50mgs a night, and it helps to control the headaches. I do still get them maybe once a month or so. But no where near as bad as they was. Just something to talk to them about and see if it might help you out.

After my 2nd bone marrow biopsy, I had horrible pain in left hip for a year. After they started me on the Methotrexate (MTX here) after a couple of doses it really helped that pain and it went away. I do also get the muscle pain, my main areas of my flare this time are my knees and ankles. I have recently started Humira injections, and I feel they are working very well. The pain is starting to ease greatly.

I understand how the prednisone can make you feel, but sometimes we just need it. I am still on 10mgs of it. I have been on it for over a year, and my tests are all good. I dont know anything about the Enbril but I am sure someone on here has been on it and they can let you know about it. If you ever need to talk please feel free to email.

Take care

Kelley in Colorado

[Guest guest]

Hi Kirk.. I feel your frustrations. I too get the headaches. I have been to neurologists and such for them even tho they say migrains, which at times they are. They never really gave me anything for them. My PCP however, put me on Topomax (sp) I take 50mgs a night, and it helps to control the headaches. I do still get them maybe once a month or so. But no where near as bad as they was. Just something to talk to them about and see if it might help you out.

After my 2nd bone marrow biopsy, I had horrible pain in left hip for a year. After they started me on the Methotrexate (MTX here) after a couple of doses it really helped that pain and it went away. I do also get the muscle pain, my main areas of my flare this time are my knees and ankles. I have recently started Humira injections, and I feel they are working very well. The pain is starting to ease greatly.

I understand how the prednisone can make you feel, but sometimes we just need it. I am still on 10mgs of it. I have been on it for over a year, and my tests are all good. I dont know anything about the Enbril but I am sure someone on here has been on it and they can let you know about it. If you ever need to talk please feel free to email.

Take care

Kelley in Colorado

[Guest guest]

Kirk;

I would like to suggest you keep a list of questions and problems to take to your doctor appointments. This helps a lot when there is so much happening and your so new with illness.

I'd like to say that I have thought of death many times over the years but thank God I am here today. I have a wonderful family and although there have been times of extreme illness I have enjoyed many more blessings. It does get better when medications start working it's just part of the disease that it sometimes takes a while to find out which medications or combinations may work.

I take a medication called Neurontin for my migraines. Some people don't like it but for me it has been a savior and I haven't had the daily headaches in about three years now.

I think some doctors don't like giving stronger medications too soon for pain so they can evaluate where your disease stands. This is just my opinion, of course, so no quotes there.

Good luck, Melt

----- Original Message -----

From: Kirk Bonanny

I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him.

besides, death can't be much worse than this.

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. Kirk.

[Guest guest]

Kirk;

I would like to suggest you keep a list of questions and problems to take to your doctor appointments. This helps a lot when there is so much happening and your so new with illness.

I'd like to say that I have thought of death many times over the years but thank God I am here today. I have a wonderful family and although there have been times of extreme illness I have enjoyed many more blessings. It does get better when medications start working it's just part of the disease that it sometimes takes a while to find out which medications or combinations may work.

I take a medication called Neurontin for my migraines. Some people don't like it but for me it has been a savior and I haven't had the daily headaches in about three years now.

I think some doctors don't like giving stronger medications too soon for pain so they can evaluate where your disease stands. This is just my opinion, of course, so no quotes there.

Good luck, Melt

----- Original Message -----

From: Kirk Bonanny

I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him.

besides, death can't be much worse than this.

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. Kirk.

[Guest guest]

Kirk, one more thing I forgot to add.. If you dont feel comfortable with your new Rhuemy, see if you can get into one of the Universitys or even a mayo clinic in you area... I was sick for 2 1/2 years before being seen by a Professor/Dr at the University of Colorado. He has had experience with Stills and I am still seeing him. There are a lot of University's that are still continuing to do research on Still's. They all seem to be very good dr's, and of course it is a teaching hospital as well, so we are teaching the newer dr to be something about it as well. For me I keep a daily journal for him. Take my temp am and pm. then on a scale of 1 to 10 i mark down my pain from everypart of my body, including headaches. and on energy and fatigue. It does help out as it is usually once a month or every other month that I do to Denver to see him. And I write out a list of my questions. Hope this helps some. With all the dr's I have seen in 3 1/2 years I am the most comfortable with him as he knows more about it and studies it. Just wanted to put that out to you as well. To see if that is an option for you as well..

Kelley in Colorado

[Guest guest]

Dear Kirk,

Hi, I'm new to the group and am still writing up my history. My Stills took

awhile to diagnoise. That thought it was everything but Stills. Don't let all

of the side effect warnings freak you out. I have been on everything for 14

years. The warnings on the labels make it seem scary but there are not so bad.

Are you talking about enbrel or is this a new drug I don't know about. I was on

enbrel for awhile and it was great for the time I was on it.

There are certain drug companies that will give you the drugs for free. Call

the Arthritis Foundation for a packet. It's a lot of paper work but it's free

so that's cool.

Let me know what drugs you're on I take a s*#t load of stuff so I can fill you

in if you like.

Be Well,

[Guest guest]

Dear Kirk,

Hi, I'm new to the group and am still writing up my history. My Stills took

awhile to diagnoise. That thought it was everything but Stills. Don't let all

of the side effect warnings freak you out. I have been on everything for 14

years. The warnings on the labels make it seem scary but there are not so bad.

Are you talking about enbrel or is this a new drug I don't know about. I was on

enbrel for awhile and it was great for the time I was on it.

There are certain drug companies that will give you the drugs for free. Call

the Arthritis Foundation for a packet. It's a lot of paper work but it's free

so that's cool.

Let me know what drugs you're on I take a s*#t load of stuff so I can fill you

in if you like.

Be Well,

[Guest guest]

Sounds to me like classic Stills Kirk,it can get very hot high fevers,massive sweating i also had the really bad groin pains too.I have headaches that i still get that are from very tensed up muscles in my neck when in a flare they can be almost unbarable for me a drug called Vioxx has helped with the haedaches a bit but your right nothin seems to work i know(complete quiet can help find paeceful place to rest when it gets real bad).I beleive you were probally refering to Enbrel Kirk its a biologic drug,it seems to help quite a few here,this is a self injecting drug more fun huh and yes it is very pricey.Ohh by the way your Avs need you to cheer louder Kirk if you need real help make sure you get it ok,i know your strong but it can really incredible the amount of pain soo dont give up theres doctor out there who will listen to you.I went though the process your goin though now about maybe this isnt Stills maybe its somethin else although my rhumitolgist held fast and steady with my diagnosis becuase way too many puzzel pieces fit take care Kirk hope you get releif soon. d.Canada

More frustration

I hate this damn disease. I went for my first appointment with my rheum. doc today, and left more nervous than before I saw him. Let me first state that I am sticking with him for a while, as he seems good.

He isn't convinced I have Stills, but does not know what else it could be. He has me going for more blood work, a urinalysis (checking diabetes) and injected something under my skin to check "skin tb"???? I think. I hope he is right, but with three other docs saying Stills, I am not counting on it.

I am not too thrilled to have to think about the possibility of diabetes, as I have enough on my plate right now the way it is. I also mentioned to him the pains in my legs, groin, feet, ankles, knees and headaches, but that didn't garner me a better pain med. He (along with every other doctor I have seen) can not explain the headaches, and does not know what to tell me about them. I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him. He did seem concerned with the hip pain, and told me to get in touch with him immediately should it get worse. He told me steroids can cause the bone to die. Nice! More shit to f****** worry about. He has me staying at 20mg of prednisone for two weeks, when I am to call him for further instruction. I have been on the edge already, and hope to hell no one sets me off as I am not too sure I will be able to stop myself from killing them!

One treatment he brought up to me as a possibility is Ebrinol. He gave me a pamphlet on it and wants me to discuss it with my wife. The potential side effects are scary, but at this stage of the game, I am more than willing to risk them. I will weigh my wife's input in this decision, but would lean towards it,besides, death can't be much worse than this. If I am willing to do it, I have to see if my insurance will pay for it. $12,000.00/year............I wish I was a pharmaceutical company!

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. My face also has been getting really red and hotter than hell at times. I can only hope my PCP will try something else on me Friday, as I am really getting sick of the constant pains in one form and/or the other. I also think I have to ask him about an anti depressant, as I know I need one. I am almost out of control, and this is totally foreign to me.

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Well, enough for now. Hope everyone is having a better day than this. Kirk.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]

Sounds to me like classic Stills Kirk,it can get very hot high fevers,massive sweating i also had the really bad groin pains too.I have headaches that i still get that are from very tensed up muscles in my neck when in a flare they can be almost unbarable for me a drug called Vioxx has helped with the haedaches a bit but your right nothin seems to work i know(complete quiet can help find paeceful place to rest when it gets real bad).I beleive you were probally refering to Enbrel Kirk its a biologic drug,it seems to help quite a few here,this is a self injecting drug more fun huh and yes it is very pricey.Ohh by the way your Avs need you to cheer louder Kirk if you need real help make sure you get it ok,i know your strong but it can really incredible the amount of pain soo dont give up theres doctor out there who will listen to you.I went though the process your goin though now about maybe this isnt Stills maybe its somethin else although my rhumitolgist held fast and steady with my diagnosis becuase way too many puzzel pieces fit take care Kirk hope you get releif soon. d.Canada

More frustration

I hate this damn disease. I went for my first appointment with my rheum. doc today, and left more nervous than before I saw him. Let me first state that I am sticking with him for a while, as he seems good.

He isn't convinced I have Stills, but does not know what else it could be. He has me going for more blood work, a urinalysis (checking diabetes) and injected something under my skin to check "skin tb"???? I think. I hope he is right, but with three other docs saying Stills, I am not counting on it.

I am not too thrilled to have to think about the possibility of diabetes, as I have enough on my plate right now the way it is. I also mentioned to him the pains in my legs, groin, feet, ankles, knees and headaches, but that didn't garner me a better pain med. He (along with every other doctor I have seen) can not explain the headaches, and does not know what to tell me about them. I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him. He did seem concerned with the hip pain, and told me to get in touch with him immediately should it get worse. He told me steroids can cause the bone to die. Nice! More shit to f****** worry about. He has me staying at 20mg of prednisone for two weeks, when I am to call him for further instruction. I have been on the edge already, and hope to hell no one sets me off as I am not too sure I will be able to stop myself from killing them!

One treatment he brought up to me as a possibility is Ebrinol. He gave me a pamphlet on it and wants me to discuss it with my wife. The potential side effects are scary, but at this stage of the game, I am more than willing to risk them. I will weigh my wife's input in this decision, but would lean towards it,besides, death can't be much worse than this. If I am willing to do it, I have to see if my insurance will pay for it. $12,000.00/year............I wish I was a pharmaceutical company!

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. My face also has been getting really red and hotter than hell at times. I can only hope my PCP will try something else on me Friday, as I am really getting sick of the constant pains in one form and/or the other. I also think I have to ask him about an anti depressant, as I know I need one. I am almost out of control, and this is totally foreign to me.

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Well, enough for now. Hope everyone is having a better day than this. Kirk.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]

Heh dude my computers actin up tonight,prob cause i should be sleepin lol i know not funny cause your not gettin any.Im sorry you havent found much releif from the prednisone,have you recently made a reduction becuase most time theres a two or 3 day period where you will be noticably more hurtin,at least thats way was with me.I beleive the other drug you were refering to trying would be Enbrel its a biologic self injecting needle,theres quite a few that have success with this drug and maybe it will also be the drug that helps you(first off though is getting a firm diagnosis been though that stage too Kirk).Good thing is my rhumitolgist has been positive from the start that it was Stills,was only few other doctors that thought it wasnt,there is no textbook were all different.It sounds to me as if you do have Stills Kirk too many puzzle peices fit.Heh sounds weird but only way i coped when i was in shoes your in now was complete utter silence sent everyone away,at least when the fevers started peaking.Take care hope you get better soon . d.Canada

More frustration

I hate this damn disease. I went for my first appointment with my rheum. doc today, and left more nervous than before I saw him. Let me first state that I am sticking with him for a while, as he seems good.

He isn't convinced I have Stills, but does not know what else it could be. He has me going for more blood work, a urinalysis (checking diabetes) and injected something under my skin to check "skin tb"???? I think. I hope he is right, but with three other docs saying Stills, I am not counting on it.

I am not too thrilled to have to think about the possibility of diabetes, as I have enough on my plate right now the way it is. I also mentioned to him the pains in my legs, groin, feet, ankles, knees and headaches, but that didn't garner me a better pain med. He (along with every other doctor I have seen) can not explain the headaches, and does not know what to tell me about them. I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him. He did seem concerned with the hip pain, and told me to get in touch with him immediately should it get worse. He told me steroids can cause the bone to die. Nice! More shit to f****** worry about. He has me staying at 20mg of prednisone for two weeks, when I am to call him for further instruction. I have been on the edge already, and hope to hell no one sets me off as I am not too sure I will be able to stop myself from killing them!

One treatment he brought up to me as a possibility is Ebrinol. He gave me a pamphlet on it and wants me to discuss it with my wife. The potential side effects are scary, but at this stage of the game, I am more than willing to risk them. I will weigh my wife's input in this decision, but would lean towards it,besides, death can't be much worse than this. If I am willing to do it, I have to see if my insurance will pay for it. $12,000.00/year............I wish I was a pharmaceutical company!

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. My face also has been getting really red and hotter than hell at times. I can only hope my PCP will try something else on me Friday, as I am really getting sick of the constant pains in one form and/or the other. I also think I have to ask him about an anti depressant, as I know I need one. I am almost out of control, and this is totally foreign to me.

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Well, enough for now. Hope everyone is having a better day than this. Kirk.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]

Heh dude my computers actin up tonight,prob cause i should be sleepin lol i know not funny cause your not gettin any.Im sorry you havent found much releif from the prednisone,have you recently made a reduction becuase most time theres a two or 3 day period where you will be noticably more hurtin,at least thats way was with me.I beleive the other drug you were refering to trying would be Enbrel its a biologic self injecting needle,theres quite a few that have success with this drug and maybe it will also be the drug that helps you(first off though is getting a firm diagnosis been though that stage too Kirk).Good thing is my rhumitolgist has been positive from the start that it was Stills,was only few other doctors that thought it wasnt,there is no textbook were all different.It sounds to me as if you do have Stills Kirk too many puzzle peices fit.Heh sounds weird but only way i coped when i was in shoes your in now was complete utter silence sent everyone away,at least when the fevers started peaking.Take care hope you get better soon . d.Canada

More frustration

I hate this damn disease. I went for my first appointment with my rheum. doc today, and left more nervous than before I saw him. Let me first state that I am sticking with him for a while, as he seems good.

He isn't convinced I have Stills, but does not know what else it could be. He has me going for more blood work, a urinalysis (checking diabetes) and injected something under my skin to check "skin tb"???? I think. I hope he is right, but with three other docs saying Stills, I am not counting on it.

I am not too thrilled to have to think about the possibility of diabetes, as I have enough on my plate right now the way it is. I also mentioned to him the pains in my legs, groin, feet, ankles, knees and headaches, but that didn't garner me a better pain med. He (along with every other doctor I have seen) can not explain the headaches, and does not know what to tell me about them. I have had a mild one all day, and it is getting worse. My face has also been getting bright red and hotter than hell, although with everything we discussed, I failed to mention that to him. He did seem concerned with the hip pain, and told me to get in touch with him immediately should it get worse. He told me steroids can cause the bone to die. Nice! More shit to f****** worry about. He has me staying at 20mg of prednisone for two weeks, when I am to call him for further instruction. I have been on the edge already, and hope to hell no one sets me off as I am not too sure I will be able to stop myself from killing them!

One treatment he brought up to me as a possibility is Ebrinol. He gave me a pamphlet on it and wants me to discuss it with my wife. The potential side effects are scary, but at this stage of the game, I am more than willing to risk them. I will weigh my wife's input in this decision, but would lean towards it,besides, death can't be much worse than this. If I am willing to do it, I have to see if my insurance will pay for it. $12,000.00/year............I wish I was a pharmaceutical company!

My headache is back, and nothing is touching it. It is usually mild throughout the day and progressively get worse. My face also has been getting really red and hotter than hell at times. I can only hope my PCP will try something else on me Friday, as I am really getting sick of the constant pains in one form and/or the other. I also think I have to ask him about an anti depressant, as I know I need one. I am almost out of control, and this is totally foreign to me.

I guess the roller coaster is going to continue for a while longer, and I am going to have to hang on.

Well, enough for now. Hope everyone is having a better day than this. Kirk.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]

Hi Kirk,

Jumping in here as I saw what you said you'd eat if it made you feel better.

Brought back memories of when I'd say "I'd drink Maalox (hate the stuff!,

and eat dirt (not too fond of that either!) if it would make me feel better.

Please ask your doc for something better to help with pain relief. You do

need (as if you didn't know) to get a good night of sleep. The "dragon"

thrives on sleep deprived victims.

Are you taking an antidepressant at this time? They not only help with

the depresssion part, but many times help one to sleep better, and help

relieve pain. No, I'm not taking any at this time myself, and not because

I don't want to, but because either they don't work or I can't handle the

side effects. The last one worked very nice, and then I started to get

horrid night sweats from it. Yes, it was from that as I experimented as

I usually do. That one was Lexipro. My favorite so far...but..darn!

Vioxx didn't do it for me..everyone is so different. The Celebrex does

help to relieve my many muscle pains (Fibromyalgia doc says.)

I've not been posting for awhile as I got zapped with a flu/cold thingy.

Haven't had the flu for about 3 years, and this was a real baddie!

Oh well I'm back.

Several are on the Enbrel and they have been helped by it..*however*

sometimes it takes one more med to find relief, and that seems to

usually be Methotrexate. Has your doc mentioned this med to you?

I was on it for about two years and I feel that it helped to put the Stills

itself in remission for me. You can read my Stills history if you would

care to. Go to: http://www.stillsdisease.org then click on: member

histories...then click on: Tricia Looker.

Hoping this is a better night for you friend.

From Wisconsin,

Tricia

-- Re: More frustration

Yes, it is Enbrel that my rheum has recommended, sorry for butchering the spelling in my original post. I am more than willing to try it, so long as my wife is comfortable with the decision also.

I am currently on 20 mg of Predisnone/day, Vioxx, Nortryptaline (spelling?) 50mg at night (supposed to prevent the headaches I still keep getting), Butalbital/ASA & Caff for the headaches.....it does very little other than maintain the pain,most of the time. At other times it does nothing and my headaches escalate to an indescribable level. I also have Vicodin, which has not been as good to me as advertised, as it doesn't really help the viscous headaches, and wires me to death so that I may stay awake until 3:00AM to "enjoy" the headache.

The drugs and side effects are scarier than hell initially, but I am willing to eat shit at this point if it will help. LOL .

One thing outside of the pain that is driving me nuts is that I never feel the same two days in a row, or even a few hours in a row. Today I felt pretty good compared to the last few weeks, but now am not looking forward to tomorrow as the last time I felt this good, I wound up back in the hospital shortly thereafter.

Thanks for the reply, I will look into the free stuff when I get the chance. I worked 14 hours today, and still am nowhere near "caught up".

Hope you have a good day, Kirk.

[Guest guest]

Hi Kirk,

Jumping in here as I saw what you said you'd eat if it made you feel better.

Brought back memories of when I'd say "I'd drink Maalox (hate the stuff!,

and eat dirt (not too fond of that either!) if it would make me feel better.

Please ask your doc for something better to help with pain relief. You do

need (as if you didn't know) to get a good night of sleep. The "dragon"

thrives on sleep deprived victims.

Are you taking an antidepressant at this time? They not only help with

the depresssion part, but many times help one to sleep better, and help

relieve pain. No, I'm not taking any at this time myself, and not because

I don't want to, but because either they don't work or I can't handle the

side effects. The last one worked very nice, and then I started to get

horrid night sweats from it. Yes, it was from that as I experimented as

I usually do. That one was Lexipro. My favorite so far...but..darn!

Vioxx didn't do it for me..everyone is so different. The Celebrex does

help to relieve my many muscle pains (Fibromyalgia doc says.)

I've not been posting for awhile as I got zapped with a flu/cold thingy.

Haven't had the flu for about 3 years, and this was a real baddie!

Oh well I'm back.

Several are on the Enbrel and they have been helped by it..*however*

sometimes it takes one more med to find relief, and that seems to

usually be Methotrexate. Has your doc mentioned this med to you?

I was on it for about two years and I feel that it helped to put the Stills

itself in remission for me. You can read my Stills history if you would

care to. Go to: http://www.stillsdisease.org then click on: member

histories...then click on: Tricia Looker.

Hoping this is a better night for you friend.

From Wisconsin,

Tricia

-- Re: More frustration

Yes, it is Enbrel that my rheum has recommended, sorry for butchering the spelling in my original post. I am more than willing to try it, so long as my wife is comfortable with the decision also.

I am currently on 20 mg of Predisnone/day, Vioxx, Nortryptaline (spelling?) 50mg at night (supposed to prevent the headaches I still keep getting), Butalbital/ASA & Caff for the headaches.....it does very little other than maintain the pain,most of the time. At other times it does nothing and my headaches escalate to an indescribable level. I also have Vicodin, which has not been as good to me as advertised, as it doesn't really help the viscous headaches, and wires me to death so that I may stay awake until 3:00AM to "enjoy" the headache.

The drugs and side effects are scarier than hell initially, but I am willing to eat shit at this point if it will help. LOL .

One thing outside of the pain that is driving me nuts is that I never feel the same two days in a row, or even a few hours in a row. Today I felt pretty good compared to the last few weeks, but now am not looking forward to tomorrow as the last time I felt this good, I wound up back in the hospital shortly thereafter.

Thanks for the reply, I will look into the free stuff when I get the chance. I worked 14 hours today, and still am nowhere near "caught up".

Hope you have a good day, Kirk.

[Guest guest]

Hi Kirk and friends,

I wrote to you about being on enbrel and I was also on Methotrexate. It was a

good combo at the time. I hate Prednisone. It makes me crazy. The mood swings

were horrible for me. One minute I'd be flying high the next I'd be sobbing on

the kitchen floor.

I was also on an antidepressant. I need a knew one though b/c Lexipro isn't

doing anything for me. There is a little secret painkiller that I can't write

about b/c of the Stills kids. I use it only when I'm in a super flare and it

also makes me super hungery so I don't like that part but it does help with my

pain. My rheumy actually reccommended it b/c Vicoden was a little intense for

me.

I have the same feeling of one minute I feel good and the next hour my hand is

on fire. It makes me think, " What did I do wrong? " I'm kind of thinking that

one doesn't have to really do anything to bring on a flare. Sleep is crucial

for me. It is really the only thing that lessens the swelling.

I have to go study.

Be Well,

[Guest guest]

Yes, it is Enbrel that my rheum has recommended, sorry for butchering the spelling in my original post. I am more than willing to try it, so long as my wife is comfortable with the decision also.

I am currently on 20 mg of Predisnone/day, Vioxx, Nortryptaline (spelling?) 50mg at night (supposed to prevent the headaches I still keep getting), Butalbital/ASA & Caff for the headaches.....it does very little other than maintain the pain,most of the time. At other times it does nothing and my headaches escalate to an indescribable level. I also have Vicodin, which has not been as good to me as advertised, as it doesn't really help the viscous headaches, and wires me to death so that I may stay awake until 3:00AM to "enjoy" the headache.

The drugs and side effects are scarier than hell initially, but I am willing to eat shit at this point if it will help. LOL .

One thing outside of the pain that is driving me nuts is that I never feel the same two days in a row, or even a few hours in a row. Today I felt pretty good compared to the last few weeks, but now am not looking forward to tomorrow as the last time I felt this good, I wound up back in the hospital shortly thereafter.

Thanks for the reply, I will look into the free stuff when I get the chance. I worked 14 hours today, and still am nowhere near "caught up".

Hope you have a good day, Kirk.

Re: More frustration

Dear Kirk,Hi, I'm new to the group and am still writing up my history. My Stills took awhile to diagnoise. That thought it was everything but Stills. Don't let all of the side effect warnings freak you out. I have been on everything for 14 years. The warnings on the labels make it seem scary but there are not so bad. Are you talking about enbrel or is this a new drug I don't know about. I was on enbrel for awhile and it was great for the time I was on it. There are certain drug companies that will give you the drugs for free. Call the Arthritis Foundation for a packet. It's a lot of paper work but it's free so that's cool.Let me know what drugs you're on I take a s*#t load of stuff so I can fill you in if you like. Be Well,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]

Yes, it is Enbrel that my rheum has recommended, sorry for butchering the spelling in my original post. I am more than willing to try it, so long as my wife is comfortable with the decision also.

I am currently on 20 mg of Predisnone/day, Vioxx, Nortryptaline (spelling?) 50mg at night (supposed to prevent the headaches I still keep getting), Butalbital/ASA & Caff for the headaches.....it does very little other than maintain the pain,most of the time. At other times it does nothing and my headaches escalate to an indescribable level. I also have Vicodin, which has not been as good to me as advertised, as it doesn't really help the viscous headaches, and wires me to death so that I may stay awake until 3:00AM to "enjoy" the headache.

The drugs and side effects are scarier than hell initially, but I am willing to eat shit at this point if it will help. LOL .

One thing outside of the pain that is driving me nuts is that I never feel the same two days in a row, or even a few hours in a row. Today I felt pretty good compared to the last few weeks, but now am not looking forward to tomorrow as the last time I felt this good, I wound up back in the hospital shortly thereafter.

Thanks for the reply, I will look into the free stuff when I get the chance. I worked 14 hours today, and still am nowhere near "caught up".

Hope you have a good day, Kirk.

Re: More frustration

Dear Kirk,Hi, I'm new to the group and am still writing up my history. My Stills took awhile to diagnoise. That thought it was everything but Stills. Don't let all of the side effect warnings freak you out. I have been on everything for 14 years. The warnings on the labels make it seem scary but there are not so bad. Are you talking about enbrel or is this a new drug I don't know about. I was on enbrel for awhile and it was great for the time I was on it. There are certain drug companies that will give you the drugs for free. Call the Arthritis Foundation for a packet. It's a lot of paper work but it's free so that's cool.Let me know what drugs you're on I take a s*#t load of stuff so I can fill you in if you like. Be Well,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]

Hi Kirk,

I am taking Enbrel. But........it did not work for me until I added MTX. At least that is what I think as after I included it, I started feeling better but, who knows?.....it might just have been that it took longer for the Enbrel to start working than I thought. It took about four months for me. I thought I'd start feeling better right away but "no way ".... We all know everyone responds differently to the same drugs so if you do start Enbrel, let it take its time. You might feel better right away. The injections are sooooooo much fun. I still can't do them without flip flops in my tummy......and that is where I inject. If you do decide to try it, keep me informed.

I like reading your posts. You have a sense of humor which I find one needs with this disease. I used to take 20mgs of Prednisone for almost a year and then decided to see what would happen if I started reducing it. It took me over a year to SLOWLY get off of it as I was too afraid to go fast and have my body react adversely which can happen. If you are on it for just a short time, you can reduce quickly. If on for a long time, once you get below 10mgs. start reducing VERY slowly. At the end I was taking 1/2 mg. a month. But, it worked and I no longer take it and my body doesn't seem to miss it.

Sorry about your head aches. I never had them. Fever, night sweats, muscle aches, joint swellings, rash, sore throat, weak chest and fatigue !!! The fatigue is still with me. I don't know how you manage to work 14 hours.....Whew !!

I hope you start feeling better soon. I usually had my flares for around two months and then I'd be better for a year or so. Now that I take Enbrel/MTX, I don't have the flares anymore. I still have the joint swellings and fatigue but nothing like before where I'd be in bed for a couple of months. Let us know what you decide to do.

Mi. Carmen

[Guest guest]

Kirk I am praying something works for you soon..I read what Carmen and Caroline said...Golden words..re read what they told you..and ah..here (((((KirK and family ))))) Love Liz NJ

[Guest guest]

Thanks again, and please email me off-list with that "pain killer", I think I may have an idea already..... kbonanny@... Thanks again!

Re: More frustration

Hi Kirk and friends,I wrote to you about being on enbrel and I was also on Methotrexate. It was a good combo at the time. I hate Prednisone. It makes me crazy. The mood swings were horrible for me. One minute I'd be flying high the next I'd be sobbing on the kitchen floor.I was also on an antidepressant. I need a knew one though b/c Lexipro isn't doing anything for me. There is a little secret painkiller that I can't write about b/c of the Stills kids. I use it only when I'm in a super flare and it also makes me super hungery so I don't like that part but it does help with my pain. My rheumy actually reccommended it b/c Vicoden was a little intense for me. I have the same feeling of one minute I feel good and the next hour my hand is on fire. It makes me think,"What did I do wrong?" I'm kind of thinking that one doesn't have to really do anything to bring on a flare. Sleep is crucial for me. It is really the only thing that lessens the swelling. I have to go study. Be Well, 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 again, and please email me off-list with that "pain killer", I think I may have an idea already..... kbonanny@... Thanks again!

Re: More frustration

Hi Kirk and friends,I wrote to you about being on enbrel and I was also on Methotrexate. It was a good combo at the time. I hate Prednisone. It makes me crazy. The mood swings were horrible for me. One minute I'd be flying high the next I'd be sobbing on the kitchen floor.I was also on an antidepressant. I need a knew one though b/c Lexipro isn't doing anything for me. There is a little secret painkiller that I can't write about b/c of the Stills kids. I use it only when I'm in a super flare and it also makes me super hungery so I don't like that part but it does help with my pain. My rheumy actually reccommended it b/c Vicoden was a little intense for me. I have the same feeling of one minute I feel good and the next hour my hand is on fire. It makes me think,"What did I do wrong?" I'm kind of thinking that one doesn't have to really do anything to bring on a flare. Sleep is crucial for me. It is really the only thing that lessens the swelling. I have to go study. Be Well, 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]

,

I think we all have a good idea what your secret "pain killer" might be......... You will be at the cyber party, yes????? You could put some in the dragon pinata and we can beat the heck out of him and run (well, maybe shuffle) like mad when someone breaks him open to try and find the "good" stuff.

Let's see.......Caroline is wearing gauze, Pattymelt is wearing bubble wrap.....maybe I will wear duct tape. You can never have too much duct tape around...good for everything but hard to do my cheer leading in......

Hope to see you there....

Mi. Carmen

[Guest guest]

,

I think we all have a good idea what your secret "pain killer" might be......... You will be at the cyber party, yes????? You could put some in the dragon pinata and we can beat the heck out of him and run (well, maybe shuffle) like mad when someone breaks him open to try and find the "good" stuff.

Let's see.......Caroline is wearing gauze, Pattymelt is wearing bubble wrap.....maybe I will wear duct tape. You can never have too much duct tape around...good for everything but hard to do my cheer leading in......

Hope to see you there....

Mi. Carmen

[Guest guest]

Hey Kirk.. I just had a thought..ask the doc if the headache is a form of arteritis??Arteries get inflammed..this sneaking little dragon does all kind of weird stuff..and not everyone has the exact same story...anyway..I hope the doc gets you fixed up really fast!!! Love Liz NJ