Re: (stillsdisease) Greetings from a new member

[Guest guest]

Welcome Kelley! The appetite problem I experienced with my onset and many years after. I was told that was a side affect of the Still's. I lost down to just bones for years but alas at surgical menopause I no longer have that and so wish I did. I am so glad you found us also and look forward to knowing you more, till soon Melt in So. Calif.

(stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access to a computer at work, but I am going to try to get one at home so I have more contact with everyone. I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all Kelley Knight1400 E Boulder StColo Spgs, CO 80909719-365-1154719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service. www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

[Guest guest]

Welcome to Stilligans Island ,

About the eating thing, I never gained much weight with having the disease

or from any of the meds. I've had the disease steady since 1979, and was always

a bit thin. The past year or so I have put on a few more pounds than I need to

have, and that was just from eating too many fattening foods such as chocolate,

pies, cookies and such. Most people gain weight or water retention from the

steroids, a few do not. Are you losing weght? If so, you might want to talk with

your doctor about it.

Many of the friends in the group feel that they actually had the disease years

before diagnosis. This is a very strange and unique disease as I am sure you

already know.

So, now you know that you are not alone, and you are not going crazy because

you have found others with the same strange disease. We will not fail to amaze

you with the topics of discussions we sometimes get into. You will learn just about

everything you never wanted to know about this strange disease called "Stills," or

AOSD..or as we sometimes refer to it as "the dragon."

Your new friend,

~~tricia~~

Wisconsin

***********************************************************************************************

-- (stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access to a computer at work, but I am going to try to get one at home so I have more contact with everyone. I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all Kelley Knight1400 E Boulder StColo Spgs, CO 80909719-365-1154719-365-6834 fax

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Dear New Friend ,

welcome to the most wonderful island I know. I am thrilled that you decided to sign on and be with us. We will help as much as we can, and never feel that you are going crazy....we are right along here with you . We really understand what you are going through. You will make many friends here...friends that you will keep forever. We will become your second family. I really look forward to getting to know you better. Welcome!!

Love, Sue #2

-- (stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access t! o a computer at work, but I am going to try to get one at home so I have more contact with everyone. I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all Kelley Knight1400 E Boulder StColo Spgs, CO 80909719-365-1154719-365-6834 fax

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Dear New Friend ,

welcome to the most wonderful island I know. I am thrilled that you decided to sign on and be with us. We will help as much as we can, and never feel that you are going crazy....we are right along here with you . We really understand what you are going through. You will make many friends here...friends that you will keep forever. We will become your second family. I really look forward to getting to know you better. Welcome!!

Love, Sue #2

-- (stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access t! o a computer at work, but I am going to try to get one at home so I have more contact with everyone. I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all Kelley Knight1400 E Boulder StColo Spgs, CO 80909719-365-1154719-365-6834 fax

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Welcome yes we are all a little crazy,i think its whar keeps us sane.You do belong here,its very good group of peeps around here.Take care sounds like youve been through alot. d.Canada

(stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access to a computer at work, but I am going to try to get one at home so I have more contact w I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all Kelley Knight1400 E Boulder StColo Spgs, CO 80909719-365-1154719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service. www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

[Guest guest]

Dear Kelley: My husbands friend is a cardiologist with a weight problem...somehow..he found out that topramax causes weight loss...this was good news for him...and maybe I should try it..but!!.. I wonder if your doc could suggest another med for you for your migraines..also..if you started it before all the stills drugs..you might not need it..the prednisone might take care of the problem..if not..there are other drugs..best of luck..and be well...here comes the spring everyone!!!( I am looking up topramax for me for weight loss ..) Liz from NJ

[Guest guest]

,

If you need a weight translplant you just giv ol' a call and I will

be happy to donate.

Welcome " home "

G.otF.M.

MA

[Guest guest]

Thank you so much. I look forward to many talks with you also. Everyone's words have helped me so much. These past three weeks have been the worst for me for a few months. I think I feel better, then the dragon raises it's ugly head to tell me it is still there. Buy the way I love the name dragon, it does fit lol. Can I get some more information on the Vegas trip. I would really try to make it and met everyone. You all seem like a great group. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

" Melt " <newme@...>

" Melt " <newme@...>

04/23/2003 06:13 PM

Please respond to Stillsdisease

<Stillsdisease >

cc:

Subject: Re: (stillsdisease) Greetings from a new member

Welcome Kelley! The appetite problem I experienced with my onset and many years after. I was told that was a side affect of the Still's. I lost down to just bones for years but alas at surgical menopause I no longer have that and so wish I did. I am so glad you found us also and look forward to knowing you more, till soon Melt in So. Calif.

(stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access to a computer at work, but I am going to try to get one at home so I have more contact with everyone.

I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

[Guest guest]

Hi Tricia. Thank you for your words of encouragement. I haven't noticed the eating and weight loss until I started the MXT, folic acid and Voltran. I stepped on the scale this morning before work and noticed I had lost another 2lbs.

From ready the stories posted on the web site, I found that I had so much in common. It just seems strange that Doctors can not put more together to come up with the diagnosis faster. I, like so many others, went through so much to get here. I have been to 20 different doctors ranging from specialties. Two bone marrow biopsies, never want those again. So much blood work, I'm surprised I still have blood. I remember one time, having blood going from both arms at the same time and filing 15 vials for one culture or another. I had pneumonia, even though the xrays didn't show it, pleurisy. The lump on the neck, stuck out 2 inches, but per dr's nothing was wrong??????? I'm just happy that I have something now. Sounds stupid, but its easier knowing a name and not feeling that I am crazy or its in my head. I think at one point one of the Dr's told me I needed to go see a shrink, as it was in my head, I was making all of this up, ugggg. Thanks for letting me vent. I know I have found a great new family, I am so happy. My mom is very excited that I have found you all also. She has been very good through all of this with me, but she doesn't know what I am going through, so she gets a little frustrated as she doesn't know how to help. Thanks again for listening. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

" TLC " <2aliens@...>

" TLC " <2aliens@...>

04/23/2003 06:44 PM

Please respond to Stillsdisease

<Stillsdisease >

cc:

Subject: Re: (stillsdisease) Greetings from a new member

Welcome to Stilligans Island ,

About the eating thing, I never gained much weight with having the disease

or from any of the meds. I've had the disease steady since 1979, and was always

a bit thin. The past year or so I have put on a few more pounds than I need to

have, and that was just from eating too many fattening foods such as chocolate,

pies, cookies and such. Most people gain weight or water retention from the

steroids, a few do not. Are you losing weght? If so, you might want to talk with

your doctor about it.

Many of the friends in the group feel that they actually had the disease years

before diagnosis. This is a very strange and unique disease as I am sure you

already know.

So, now you know that you are not alone, and you are not going crazy because

you have found others with the same strange disease. We will not fail to amaze

you with the topics of discussions we sometimes get into. You will learn just about

everything you never wanted to know about this strange disease called " Stills, " or

AOSD..or as we sometimes refer to it as " the dragon. "

Your new friend,

~~tricia~~

Wisconsin

***********************************************************************************************

-- (stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access to a computer at work, but I am going to try to get one at home so I have more contact with everyone.

I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

____________________________________________________

IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you Sue#2. You all make me feel so welcome. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

" A. Matera " <cjlabbe01@...>

" A. Matera " <cjlabbe01@...>

04/23/2003 07:30 PM

Please respond to Stillsdisease

<Stillsdisease >

cc:

Subject: Re: (stillsdisease) Greetings from a new member

Dear New Friend ,

welcome to the most wonderful island I know. I am thrilled that you decided to sign on and be with us. We will help as much as we can, and never feel that you are going crazy....we are right along here with you . We really understand what you are going through. You will make many friends here...friends that you will keep forever. We will become your second family. I really look forward to getting to know you better. Welcome!!

Love, Sue #2

-- (stillsdisease) Greetings from a new member

Hi to everyone. My name is Kelley and I am 32. I have read everyone's stories and they have made me feel so much better. It is so nice to feel that I am not alone out there and not going crazy. I have been dealing with being sick for almost 3 years and was diagnosed in September 2002 with Still's by a Rheumy at the Univ of Colo. I was sent to a Rheumy here in Colo Springs and was just re-diagnosed last month when he saw my rash. In retro spect I think I have had this since I was 18yrs old. I have had a really bad onset of pain the last 3 weeks. I was unable to walk and fell in the shower a week ago. I am actually trying to work again today, so far so good. I am trying to learn how to be the new me, which is very difficult. I used to do a lot of out door manual work. I am so glad that I have found Stillagins Island. I currently only have access t! o a computer at work, but I am going to try to get one at home so I have more contact with everyone.

I am currently taking 7.5 mg MXT orally, 20mgs of Prednisone, 1mg Folic Acid, 75mg Voltran twice day, but I also take 50mgs of Topomax (for migraines). Can someone please advise me with eating? With the MXT and the Topomax I have no appetite and the Prednisone is not making any difference, my family is really worried about this fact. Has anyone else went through this part of the meds? Thank you all

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

____________________________________________________

IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you . I will let you know once I get to the transplant stage lol. Hopefully I will not hit that stage yet. I needed to lose a little weight, anyway. Thought maybe if I lost some it would help with the pain, maybe not. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

<cynthia@...>

<cynthia@...>

04/24/2003 06:03 AM

Please respond to Stillsdisease

Stillsdisease

cc:

Subject: Re: (stillsdisease) Greetings from a new member

,

If you need a weight translplant you just giv ol' a call and I will

be happy to donate.

Welcome " home "

G.otF.M.

MA

[Guest guest]

Hi Liz. I have been on the Topamax for at least 1 1/2 yrs so I haven't notice anything with the weight, until they added the MXT and Voltran in the mix this last month. but I got to thinking last night that not only with the new meds. My pain hadn't been this bad for a long time to where I was unable to walk or anything else. So maybe it has to do with the pain also and all the meds. I think I forgot to add Vioxx and Viccodin in my list of meds. I feel like I am on so many, I can't keep track of them anymore, lol. I had some weight loss when I started the Topamax to begin with. Thank you sooo much for the information. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

The mission of Memorial Hospital is to optimize the health and comfort of our patients, their families and the community we serve by providing the best and most sensitive professional care and service.

www.memorialhospital.com

The information contained in or attached to this electronic message is privileged and confidential, intended only for the use of the individual(s) named above. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this communication in error, please inform the sender immediately and remove any record of this message.

lizdaly101@...

lizdaly101@...

04/24/2003 07:12 AM

Please respond to Stillsdisease

Stillsdisease

cc:

Subject: Re: (stillsdisease) Greetings from a new member

Dear Kelley: My husbands friend is a cardiologist with a weight problem...somehow..he found out that topramax causes weight loss...this was good news for him...and maybe I should try it..but!!.. I wonder if your doc could suggest another med for you for your migraines..also..if you started it before all the stills drugs..you might not need it..the prednisone might take care of the problem..if not..there are other drugs..best of luck..and be well...here comes the spring everyone!!!( I am looking up topramax for me for weight loss ..) Liz from NJ