I've used Evoxac for over a year with no negative side-effects. It's when I don't take it that I have problems. And because I takke opioids as well, the potential for dry mouth is even worse. But that isn't the only problem, there's also difficulty swallowing which caused me to start looking for answers in addition to my eyes which have bothered me with dryness for years. The plugs worked in my eyes, so I don't have to take Restasis, but I had to have emergency abdominall surgery last week and I was not allowed any foods or liquids. If I hadn't been allowed to suck on ice chips, I would have gone insane. That won't happen again. The next time a surgeon or doctor negates to enter orders for necessary meds, I'll get it from my purse and let it dissolve in my mouth. I'm sure I've tasted worse and waiting for meds in a hospital from doctors who deny ever authorizing them sucks.
I've had Sjogren's for 18 years or so (diagnosed for 13, but I definitely remember the onset, at about age 22, with the swollen/painful saliva glands), and pilocarpine doesn't do much for me except make me feel ... odd. So I don't take it. I've considered Evoxac but never pursued it because I didn't think it would be that different. However, I believe now I will at least try it. So I just wanted to say thanks to everyone for your input.
I don't know what pilocarpine is. But I've been on Evoxac for several years now. I still find myself getting hoarse now and then, but overall, I do not have painful glands. I do drink a lot of water but not because the doctor ordered me to, it's because when you wake up from a dream where you were crawling around the dusty sahara and would sell your body for a droplet of rain, you just gotta drink. I carry a 32 oz bottle of flavored water with me everywhere.
And I love my rheumatologist. He lets me take Evoxac up to 4 or more times per day. I was having dryness and loss of voice issues before the pain and opiods, and the salivary gland biopsy confimed Sjogrens. I could not live without Evoxac. Nope, couldn't do it. If you ever find yourself having surgery with an NPD order, make damn sure they let you have ice chips or chew up an Evoxac. I've realized over these past few years and I really don't care how bad something tastes over it's benefits. It could taste like sewage and I'd chew it up. If I didn't have ice chips, I would have crawled to my purse and chewed up an evoxac. You'll like it, it's fast and to date, I've had zero side effects. Lsa
Evelyn99. I first tried pilocarpine, (which is similar to Evoxac) but like Evoxac alot better. Its longer acting and it actually gave me back alittle bit of mucus, which i haven't had in yrs. Helps me with my odd sense of smell, and definately soothed my throat some from dryness. I'd give it a try. Good luck. I agree, could not live without it. Actually can't sleep without it because i choke on my dry, swollen tongue....so happy thats in the past!
dlt48. Very interested in your comments about Evoxac being better than pilocarpine. I started taking pilocarpine six months agoe when I got multiple infections in my mouth and throat due to extreme dryness. It has helped not only produce saliva, but also I can sweat, have more stomach acid, and increased vaginal moisture. Only downside is frequent urination. Can you share what you like better about Evoxac? Especially getting some mucus back! I have very little in my mouth and throat. Thanks so much!
I had good results on both-the Evoxac seems to last longer. I only take 3 a day instead of 4 pilocarpine. The Evoxac doesn't seem to give me that huge rush of saliva that Pilocarpine does. However both can make me break out in the sweats within minutes of taking it. Trying to figure out why-- sometimes i take it on an empty stomach-usually in the middle of the night and i won't sweat, but then if i take one in the am with my coffee i can sweat like crazy. I try to take them w/food during the day so i don't get that crazy rush of moisture. But i get the same relief from it as you, not just my saliva-so i can't complain. I'd rather have the crazy rush, then none at all-just wish they would make a longer acting med so we could regulate our bodies a little better. Someday..
The Following User Says Thank You to dlt48 For This Useful Post: MsMarty (07-08-2012)
I have been taking it for a few weeks now. It's helpful. I am having less dryness while I am trying to sleep. However, I go back and forth as to how bad different symptoms are. This is a very strange illness. Maybe after I have been taking it longer, I will have a better idea of how well it works.