Author Topic: Remission  (Read 2562 times)

Sjenny

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Remission
« on: July 13, 2008, 05:47:16 PM »
Hi Everyone:

I just wondered if anyone here has ever gone into remission and what that was like and for how long and most importantly what factors you guess might have contributed to the remission (diet, meds, environment, pregnancy) etc.

It would kind of give me hope, I guess.

Sue

abner

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Re: Remission
« Reply #1 on: July 13, 2008, 06:09:02 PM »
I had to stop Evoxac recently, and am doing much better than I would have predicted.  I would have to say that I am in remission.  I still rinse several times a day with biotene, take restasis for my eyes, and use eye drops.  In other words, still dry, but not in pain.

I recently got my thyroid under control.  That's the only thing I can think of--just one less stress on my body.

Pooh

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Re: Remission
« Reply #2 on: July 13, 2008, 06:31:08 PM »
Hi Sue,
My rheumy told me once that my blood work was normal.  This was after being dx'd for about 11 yrs. with Sjs.  I ask him if that meant I didn't have Sjs anymore.  He said no, that it just was not active, but I would have it for the rest of my life.  So I suppose I could have been in remission, but he didn't term it that way. 

But in answer to the rest of your question, I didn't feel any different.  My legs still hurt, my joints still hurt and I was still dry, just not to the extent I had been.  I'm afraid all that has changed once again, but that's the nature of this disease.

Pooh

Scottietottie

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Re: Remission
« Reply #3 on: July 14, 2008, 10:35:22 AM »
Hi Sue  :)

I had a really bad time during my 30s with yeast infections, tremors, neuropathy, tennis elbow etc. Got tested for MS - didn't have it and was told I was a raving hypochondriac. I have to admit, at that stage I didn't feel perticularly dry, though looking back I do believe my vagina was drier than it should be and dentally, my mouth has always been a disaster area.

This sounds silly but I fell downstairs and broke my back. That pain took over from any other pain I was experiencing. As it healed the neuropathy went away. I think I'd given my whole ervous system a tremendous jolt. Now I wouldn't recommend anyone breaking their back. That would be stoopid.

After that incident however I had 'remission' during most of my 40s. I took a College course, got back into work and got a job and childcare apart, I don't think I could have done that in my 30s.

Having been on Plaquenil my eyes are a bit better than they were when I went on it. There's life after SjS.

Take care - Scottie  :)
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Sjenny

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Re: Remission
« Reply #4 on: July 14, 2008, 04:47:15 PM »
Abner - I'm so glad to hear that you are doing better than expected!  I have thyroid trouble as well, tricky to get under control.

Pooh - It is wonderful that your bloodwork is normal.  That must mean the inflammation has stopped which is half the battle.  The other half of the battle is to regenerate the damaged tissue.  Have you seen this amazing story about the man who grew back part of his finger - nerves and everything  - even his fingerprint and nail?  http://news.bbc.co.uk/2/hi/7354458.stm

He used what he termed as "pixie dust" but what is really extra cellular matrix from his brother Dr. Stephen Badylak, a regenerative scientist from the University of Pittsburgh.

So I'm considering writing Dr. Badylak and suggesting that his pixie dust be injected into salivary glands, lacrimal glands, nerve endings and joints- why not?  At worst, he may consider me some kind of kook and ignore the letter or maybe it will plant the seed of an idea.  I don't think I'm a kook, (although the neighbors may disagree  ::) ).

Scottie - Sounds like you got a "lucky break" (forgive the pun).  Er, I don't think I'll follow suit, however!

Best Regards,
Sue