Flare up of SS symptoms due to the flu

Hi beverly,

Im sorry you are having such a tough time. Pilocarpine did work somewhat for me. I used it along with the biotene mouth rinse and toothpaste. I also used the gel when on the road. I sucked on ginger candy or the saliva producing mints when necessary. For a while, I lived off of nutritional drinks, ginger and tumeric tea,steamed zucchini and squash. I felt that occasional warm milk eased my throat. Right now, im on methotrexate gor RA and that has helped the swelling and dryness in my throat and nose. Hope you geel better.

I can’t really help but I can sympathise as same thing is happening to me following a heavy cold. Sjögren’s is the absolute pits. 

Hi. I have been having the same issue with a flareup with the flu. Dry mouth, eyes, achy and exhausted. Hopefully, it will clear up when the flu does.

I took pilocarpine and had a very bad experience with it. It made me very depressed. I was crying, thinking that all my loved ones were going yo die etc. Three days after I quit taking it, I was back to normal. That maybe why your doctor is hesitant but medicine affects everyone different. I noticed a slight improvement but not worth the risks for me.

Thanks for your reply. There must be a reason he doesn’t prescribe it. Seems like I’ve seen a few people comment that it helps with saliva production but side effects. I’m just sort of panicking with my mouth burning and sooooo dry. I was holding my own with this disease and feeling pretty good but I’m back to square one and worse than ever.  

Hi Beverly!

I almost always have a flare up whenever I get sick with a cold or virus.  My eyes get drier, my lips tingle, and my teeth ache!  No fun, that’s for sure!  I am on pilocarpine and it’s helped me tremendously .  If I were you I would insist on trying it!  Some people say that it might even help with the dry eyes, but I don’t think it did for me.  I take Restasis for my eyes and it works great for me!  Anyway, I hope you get some relief for your dry symptoms soon.  Good luck!

Someone suggested Pilocarpine to me some years ago but when I looked up the drug & side effects, it was obvious that I shouldn't take it.

I have had SS for years but it was only actually diagnosed/confirmed a couple of weeks ago.  My mouth is a problem but generally feels better when I use a Chlorhexidene mouthwash & Corsodyl toothpaste.

I have been told that Gelclair is also helpful.

I too have had a flare with an infection.  I have a compromised immune system.

Eyes, I use Ciclosporin at night [Restasis] & Hyabak lubricating drops often.

I will put a link to Pilocarpine, it may take a while to be approved.