SJS and moisture producing glands ---- What about sweat glands?

[Ceceraven]

         Hello fellow sjoggies  ,  since my diagnosis of SJS in 2009 I've been wondering  ?  Since all of us suffer from some sort of sweating or not sweating complaint ; why aren't the sweat glands effected by SJS ?  SJS is a disorder of the moisture producing glands  --  aren't sweat glands moisture producing glands ? (of course they are  ).  I have asked many of the "powers that be" and no one could answer this guestion  .  Just wanted to know if anyone else has pondered this possibility.  By the way I can sweat profusely whether I am HOT or freezing COLD  .

                                                   Be kind to tourselves,  Ceceraven

[dainbramage]

Pilocarpine makes me sweat so bad.  Even before I take the drug in the morning I sweat so bad after I shower, even if I take a cool shower its horrible.  I have to turn on a ceiling fan and lay under it to cool down, now I feel I got to take another shower.  I tried the other drugs but one made me so sick, I was throwing up every morning.
The point I was trying to make when I went somewhere else, is my mouth is still dry and I sweat with the drug. Sometimes overwhelming sweat and then I become so cold its horrible. Sometimes I sweat even if it is not hot and it makes me so cold I can't get warm enough.  I don't know why, I don't think I asked my rheumy because my mouth is my worst problem.  That is a good question, I will ask her when I see her, I need to write it down so I won't forget. hahahaha

[eye2dry]

I do not sweat anymore, do not even apply deodorant/antiperspirant to my underarms. Therefore, if I get too hot I need to cool down quick with shade and a cool drink.

I do not use pilocarpine, tried it march 2011 and it gave me the worse verigo with vomiting.

EYE2DRY

[valene2009]

havent sweated for over  2 years.. i am 37 years old and take evoxac and still dont sweat but i do get hot

[Ceceraven]

      I use to know what pilocarpine is ------- but I don't remember now  . Will someone inform me  .



                                                           Be kind to yourselves,   Ceceraven

[Madison Granny]

Pilocarpine is like Exovac.  I think SJS does effect some of our sweat glands.  I know it has mine.  I haven't sweat in over 10 year.  No need for deodorant.  When I do get overheated I start to itch and get very light headed sick to my stomach.

[Ceceraven]

      Thanks Madison Granny,  NOW I remember  .  I am on Evoxac   .  It works for me, but I had to play with the dose because of HOT flashes.  WOW,  I forgot what the subject at hand was, and that I started this conversation      .   WOW, gotta love brainfog 


                                                   Be kind to yourself,   Ceceraven

[KarenR]

I took pilocarpine for about a month and both sides of my neck hurt so bad I couldn't hardly turn my head. My GP said the swelling and pain were coming from my salivary glands. I quite the pilocarpine and went back to Evoxac and the pain was gone in a few days.

I also am one of the people who sweat profusely with the slightest bit of effort. Drives me crazy. If I am going to do any cleaning or run the vacuum I have to keep a small towel over my shoulder so I can wipe the sweat from my face and head. Because of the sweating my neuromuscular guy tested me for Lambert-Eaton. My score was high but he said I don't have Lambert-Eaton because I have never been a smoker. He says I just have the antibody to it, just like I have a bunch of other antibodies. The only thing they know I have for sure is Sjogrens. My rheumatologist told me yesterday that I very definitely do have an autoimmune disorder, it's just not clear at this point how many or which ones I have besides Sjogrens. It's funny but yesterday when I saw her I actually felt pretty good and my pain level was low. Today the entire day I have felt like my body is on fire, especially in my hands and wrists, knees, ankles, and feet. Now why is it that can't happen on those days when I am in her office?

Karen R

[Piebird]

I dont sweat either. No need for deoderant here at all.

However in the summer and at night I sweat sooo much on my lower back. It will trickle down and make my waistband drenched or tickle and wake me up!

[williak]

I take pilocarpine.  I don't sweat unless exercising.  And if I don't take the pilocarpine within 4 or 5 hours before I exercise - no sweat. 

For about 9 months before I started the pilocarpine, I did not produce any earwax.  It began again with the pilocarpine.

Kim

[dainbramage]

KarenR, I too have to have a towel or something to wipe the sweat when cleaning or moving around.  I never sweated like this before.  It is bad after a shower.  I even take a cool shower and I still sweat, but my mouth still is dry.  Sometimes at work I sweat so bad I have to get a towel and give myself a wipe down and now I take an extra deoderant and baby powder., its awful.

[gardenlover]

I was in our sauna the other day trying to warm my feet (it also helps to detox) and doesn't bother my eyes.  It was about 110-115 degress and after 30 minutes, my feet were still so cold they were blue...and that was while massaging them, too. 

[Doxie]

I also take pilocarpine. However, I don't sweat anymore, or at least not much. I do still use deodorant.

When I was at the NIH last summer for a Sjogrens evaluation, it was very hot and humid. The Rheumy put his hands and my arms and noticed that I was bone dry.  He said that's part of Sjogrens.

I just wonder about the rest of my body, on the inside, it can't be good since so much of the body IS water.

[Skylar]

I don't take any medication like pilocarpine (Salagen) and cevimeline or Exovac. I also don't sweat and don't use deodorant - can't remember when I noticed it because there was a time when I did sweat in the heat and humidity.

[Belsey1]

I sweat worse than I ever have and don't take Pilocarpine or Exovac.  Some sweat, some sweat more, some barely sweat and some never sweat, some take Pilocarpine, some don't.  Seems like there is no rhyme or reason to this thing called Sjogren's