Re: Re: Remission is over...FOR NOW

[Guest guest]

Hi Rhonda

I lost around 30 lbs as well, when I was first ill. I had no appetite

and bad stomach pains when I ate even tiny amounts. I've put on about

14 lbs, thank goodness, as I was seriously skinny. Funny to be worried

about that after years of battling with post pregnancy weight! Now I

try to eat little and often, never big meals. Never went off chocolate;

funny that...

C 2 (UK)

On 23 Feb 2004, at 14:17, Rhonda wrote:

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[Guest guest]

Hi Rhonda,

It's funny how your remissions have lasted longer each time - so have mine.

My first remission lasted about 6 months. My second remission lasted 1 year and 3 months (ish) ...

With regards to your weight loss .... it could also be down to having fevers. I think when we have fevers, our hearts race and our metablic rate increases. My latest relapse seems just as bad as onset, and my doc has said it will be longer than the initial 18 months before I go back into remission - it's been about 8 months so far.

When you get your results see what your CRP is as thats a good marker to see if you are getting better. Mine was 170 last week although I think that could be down to the sudden drop of MTX from 20mg weekly to nothing at all.

Were you in drug induced remission before your latest relapse ? If so what were you on.

Do you think anti-inflammatories (when in remission) can help make remissions longer?

Steve

-----Original Message-----From: Rhonda [mailto:rgcmagnolia@...]Sent: Monday, February 23, 2004 2:18 PMStillsdisease Subject: Re: Remission is over...FOR NOWHi, SteveThe symptoms are butterfly rash, fatigue, afternoon fever, a lot of joint pain and some swelling (especially the wrists and ankles). I am able to walk, but it is very painful. I have also experience an unexplainable weight loss of over 30 pounds causing me to be underweight, which is very unusual for me. I don't know if the weight loss is related to the flare, but I suspect it is. I don't have all of my blood tests results . I am going back tomorrow to the doctor. I DO know my sed rate is elevated, but I don't know the actual number yet. This is my third relapse. My first remission lasted a few months, my second a full year, and this one was 1 year and 7 months, so I am hoping each time the remissions will last longer, and that is what my rheumy thinks also. No relapse has ever been as devastating as the onset of the disease. I knocked on death's door at that time...more than once. This relapse has been rather bad because I lived in denial for as long as I could and didn't increase my medication. I just didn't want to believe what my body was telling me. Also, I started having eye pain and extreme dryness and a twitch that was there 24 hours a day. I saw a neruo-ophthalmologist who told me that is related to the Stills.I hope this answers your questions...Thanks for asking...Blessings!RhondaVisit 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 Rhonda,

Sorry about the news of reading that your remission is over, however..

it is good that you seem to have a positive attitude by adding..FOR NOW.

Was this a nonmed remission? Just wondering if you were/are on some

meds throughout the remission to keep the disease under control, and

if so....do you think the meds have become less effective?

The loss of weight has happened to some who have been diagnosed with

the AOSD. Hopefully you will have some more answers on that soon, as the

"not knowing" can be very stressful, and one doesn't need added stress as

you know.

Rhonda, please let us know what comes of the visit with your doctor...okay?

Good to have you back, and sorry at the same time.

Wisconsin,

Tricia

-- Re: Remission is over...FOR NOW

Hi, SteveThe symptoms are butterfly rash, fatigue, afternoon fever, a lot of joint pain and some swelling (especially the wrists and ankles). I am able to walk, but it is very painful. I have also experience an unexplainable weight loss of over 30 pounds causing me to be underweight, which is very unusual for me. I don't know if the weight loss is related to the flare, but I suspect it is. I don't have all of my blood tests results . I am going back tomorrow to the doctor. I DO know my sed rate is elevated, but I don't know the actual number yet. This is my third relapse. My first remission lasted a few months, my second a full year, and this one was 1 year and 7 months, so I am hoping each time the remissions will last longer, and that is what my rheumy thinks also. No relapse has ever been as devastating as the onset of the disease. I knocked on death's door at that time...more than once. This relapse has been rather bad because I lived in denial for as long as I could and didn't increase my medication. I just didn't want to believe what my body was telling me. Also, I started having eye pain and extreme dryness and a twitch that was there 24 hours a day. I saw a neruo-ophthalmologist who told me that is related to the Stills.I hope this answers your questions...Thanks for asking...Blessings!Rhonda