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Pilocarpine RX for dryness

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Sjogren's Syndrome
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Posted 12/20/2018 12:07 PM (GMT 0)
Hi...My Rheum just prescribed Pilocarpine (generic for Salagen) due to my dryness in mouth, nose and eyes. I have been complaining of dryness in my eyes for many years but it was not addressed until I kept complaining that I have not been able to taste food for the most part of smell many things since last June. I just started the med yesterday and I am concerned about side effects because I am not a fan of meds and I am on so many...But, I have noticed that my mouth is less dry already! Does anybody have experience with this? I wanted to bring it to discussion in case others wanted to ask their Drs for something to help.
Posted 12/29/2018 8:33 PM (GMT 0)
I was recently prescribed Pilocarpine. Doc said to start with one tablet a day, increase it periodically until it helped, however, two weeks after starting just one a day I suffered severe sweating. I think I'm on the back side of menopause, but this seemed like full blown, more intense hot flashes than I originally had. Within a couple of weeks of stopping all has returned to normal. Remember this is a POSSIBLE side effect and you're not destined to have this as well. Good luck!
Posted 12/29/2018 9:57 PM (GMT 0)
Thanks MMD... that's too bad! I have been on it 3 tablets a day for about 2 weeks now. No side effects that I have noticed. I had night sweats but I think it was yet another med! Thanks for reaching out.
Posted 1/4/2019 7:32 PM (GMT 0)
So far, so good! I am starting to taste things again! Hope it lasts. I definitely am noticing some positive changes with this med so far.

OK, so not everything. Today nothing but yesterday I noticed more taste so...

Post Edited (Darla) : 1/5/2019 8:05:45 AM (GMT-7)

Posted 1/19/2019 8:03 PM (GMT 0)
For anybody following at home...I was not impressed with the Pilocarpine results (3x/day)and when my Rheum said we will try the other option (whatever it is will take forever for them to get approved) I stopped taking it because who wants meds they are not benefiting from? After a couple of days my eyes got really sandy and gritty and my nose so dry! I did not realize it was in fact helping and started again. It helps me a lot. But, my mouth still feels burned on the inside and I can't taste most things...So it is not a cure for anything (for me) but it is cheaper than all the eye drops!

If I switch to that other med I will post.
Posted 2/21/2019 4:28 AM (GMT 0)
Thanks for the update Darla. It's nice to see someone is using this med. I am about to start on it after being sent all the way to Stanford for "hairy tongue/dry mouth." I am neg. for Sjogrens but on a lot of medications for gi/bladder/back/allergy issues. I will be starting pilocarpine as soon as mail order script arrives. I have tried just about everything for excessive dry eyes, all kinds of other lube products, and oral products like discs, drops, gums, gels, sprays with very little help. Probably the ACT brand gum seems to help the most.I think the chewing motion is helping. The moisture doesn't increase that much with the gum but its cold like a strong Altoid Mint.
Posted 2/21/2019 11:11 AM (GMT 0)
Hi lillostpoo, nice (?) to meet a fellow sufferer...I have a Rheum appt tomorrow and I am going to ask about the alternative to Pilocarpine. I do think I am better with it than without it but hope for more progress with my mouth and the smell/taste issues. It has helped my eyes...I usually have to keep putting drops in due to the gritty feeling but these days not so much. I would love to hear your results and wish you the best with the med!
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