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Subject:
From:
Don or Nancy McPherson <[log in to unmask]>
Reply To:
Don or Nancy McPherson <[log in to unmask]>
Date:
Wed, 20 Nov 2002 16:48:02 -0800
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<<Disclaimer: Verify this information before applying it to your situation.>>

My question  was about the side effects of Salagen, taken to relieve symptoms (dry eyes and mouth and mucous membranes) caused by Sjogren's syndrome. The side effects  listed are mostly digestive, and I thought it might be risky for people with CD.  I wondered if anyone on the list had taken it successfully or not.  I received four responses, and decided to do a detailed copy of each as a summary, for the archives.  

Nancy, I took Salagen for about three weeks and didn't have any digestive
problems.  However, I had to switch to Evoxac due to the excessive sweating I was
having with Salagen.  I've tolerated the Evoxac much better, and I have found that
it has also helped my eyes.

--------

I have both CD and SjS.  I have been on Salagen for about 18
months and didn't really notice any bad side effects when I
went on it.  The only thing that happened (and still does)
is a rush of saliva about 20 minutes after I take it.  It
was a little embarrassing at first b/c after being dry for
so long I had to learn to manage having saliva again.  If I
wasn't careful I would spit when I talked.  That was easy
enough to do once I remembered how.  = )  Good luck.
--------

    I have CD and primary Sjogren's.  I was told that since my S.D. is not 
secondary to another similar autoimmune disease like Lupus, Scleraderma, R.A. 
is it considered primary.  Five years ago, Sjogren's was suspected and I was 
given Salagen.  Then it was decided I didn't have Sjogren's after all.  Now 
Sjogren's is back and official.  My experience with Salagen was so scary the 
first time, I have chosen not to take it this time.  Or at least until my 
symptoms worsen.  The big side effect was sweating.  I'm not talking about a 
little hot flash.  I'm talking about soaking the bed, changing my night 
clothes three times during the night and having to sleep on towels.  Sweating 
like that has to do do something to one's nervous system.  And, in fact, 
three months later I began to show the signs for coronary artery spasm which is caused by a malfunction of the sympathetic nervous system.
    Anyway, given that, I haven't researched whether or not Salagen is 
gluten-free.  It has far bigger dangers in my opinion.  When and if I have to 
take it (and I still may choose not to), I will take a smaller dose than what 
is prescribed (at least to begin with).
--------

Yes, I too have Sjogren's. I asked about taking it and my Rheumatologist said he didn't recommend it because of the side affects. Not only the digestive but he said it can increase the amount you perspire. He also said everyone that insists on taking it discontinues it after a short time. 
Let me know what you think about taking it. My Dr. is the only other opinion I have had. I would be interested in what you find out.

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