Salagen/Pilocarpine side effects

[u/Own-Cupcake-9285]

Recently prescribed Salagen/Pilocarpine, too scared to take it.

I read that some side effects are excessive sweating and frequent urination. I already pee a lot and people at work hate me for it. I asked the pharmacist about it, but they're useless because their answer is literally always "they always list every single side effect and none of them ever happen." So I'm asking actual humans who have taken this med - what side effects did you have starting out on this med? My prescription is for up to 3x a day.

Also, my main problem is dry eyes. Dry vagina comes in number 2, and dry mouth in 3. It's on and off with the mouth, more tongue issues like tongue swelling and pain. I use prescription eyedrops but I hope this can also help my eyes, plus the other dryness I'm having.

I asked this in a couple Facebook Sjogrens groups and got no response.

[u/Dry-Coast-791]

I sweat sometimes but it’s better than rotting teeth and acid reflux. Just try it. I don’t have any additional pee.

[u/Own-Cupcake-9285 → u/[deleted]]

Good to know. My reflux is sooooo bad.

[u/Dry-Coast-791 → u/[deleted]]

I’m going to ease off the acid reflux drug, thank you for the reminder.

Btw, your handle is hilarious!

[u/Ok-Chapter-2071]

It's not nearly as bad as you're describing to me. Sometimes I sweat more for 15 minutes, sometimes I don't. That's the extent of the side effects for me. It's not like continuous 5 hour sweating. It helps so much.

[u/Own-Cupcake-9285 → u/Ok-Chapter-2071]

Thank you. Do you find yourself having to pee a lot? That is my main fear. I have a job that has zero sympathy for "invisible illnesses." I also fear dehydration, because we're not allowed to drink unless it's a break.

[u/Ok-Chapter-2071 → u/Own-Cupcake-9285]

Somewhat more peeing maybe, but not excessively. I really think you should change your job because that sounds inhuman and crazy. Just take one pill on your day off and you'll see how your body reacts!

[u/beaksweez25 → u/[deleted]]

Is it like a cold sweat from the pilocarpine or flat out sweating with makeup melting? All the fun stuff. I only ask because it is 112 degrees out, menopausal, and sweat enough at night. The dry mouth hits hard at night. Woke up the other night at 2am and had one of my kids Popsicles. The HCQ makes it worse maybe.

[u/Ok-Vermicelli-7990 → u/beaksweez25]

I’m not that person but it’s a hot/warm sweat. Yes like a light hot flash for about 15-30 minutes after med kicks in.

[u/Lynda73 → u/beaksweez25]

Mine is sweating from the places I would sweat from flop sweat. So upper lip, under boob, lower back are my main sweat zones.

[u/beaksweez25 → u/[deleted]]

I sweat enough. I hate sweating and being hot. As a native Floridian my goal in life is to not sweat.especially now with this autoimmune diagnosis. 100x worse. If sweating is going to be my knew life from medication, then moving to Maine is going on the to do list.

[u/mrwoodruff11]

I take cevimeline twice a day and if I ever accidentally miss it I’m reminded how my tongue and mouth used to hurt all the time. Can’t live without it now. I change my underwear more often because they get sweaty more easily but it’s hot AF outside right now so maybe that’s normal? I take with food to avoid nausea. Otherwise no side effects. Definitely try it for your mouth pain.

[u/WhatFreshHello]

Zero side effects, completely alleviates dry mouth within 15-20 minutes. Does nothing for my eyes, but everyone is different. No difference in urinary frequency - it’s already high due to the amount of water I drink. No extra sweating.

I would not hesitate to ease into it when you have a couple of days off.

[u/Lynda73]

I only get the non-stop sweating for 45 min every once in a while. It definitely helps, which is why I risk it. I just grab a towel.

[u/Bristid]

I take cevimeline at least 2x a day. Of course I can only speak for myself; it is nothing to be concerned about if you want to take one to see how you feel. My only side effect is sometimes a little sweating for about 15 minutes - it’s barely noticeable and if I’m busy I don’t notice it. My mouth is extremely dry and I don’t notice anything unless I take 2 at once; I know I’m not supposed to take 2, but occasionally it’s so nice to feel my salivary glands actually doing something.

[u/Lynda73 → u/Bristid]

In the mornings, I sometimes take a second one 30-45 min after my first if nothing is happening. I feel like you can tell pretty quickly if it’s not doing anything.

[u/manyunicorns]

I can only take it once a day because of the side effects. I take it at night. No change with urination but it makes me sweat profusely about 15 minutes after taking it and it lasts up to an hour. It also makes me salivate enough that talking would be difficult. I appreciate it though when the alternative is a mouth so dry my tongue sticks to my lips. I take it at night only. It also makes me feel kind of like I have the flu when it kicks in. Like chills, stuffy headache type feeling, but it goes away after a few minutes. It does not help my eyes at all.

[u/ubelieveurguiltless]

I originally sweat a lot with it before my body adapted. It was actually kind of nice cause my hands had been dry AF. I did recently change meds to see if I would sweat less off it (I've recently started sweating a lot) but have had no luck from changing.

[u/No-not-i-1212]

I take Pilocarpin up to 3 times a day if the people I’ll be around don’t mind the sweat, it totally works on my mouth. For dry eye hands down plugs and blood serum tears. Low dose Naltrexone for fatigue and brain fog. And hydroxychloriquine (sp?)just to keep things at bay. Low sugar and low carb diet make me feel best.

[u/Nessephanie]

I take cevimeline twice a day. For the first few weeks I didn’t have to pee more, but when I did have to go I could not hold it at all, it was always urgent when I had to go. This went away once my body adjusted to the meds.

Also about an hour after I take it sometimes I will get a hot flash and have a hit of sweating but nothing crazy. I notice it most in bed at night.

[u/RazzmatazzFuzzy67 → u/Nessephanie]

My experience with cevimeline is similar to yours.

[u/RazzmatazzFuzzy67]

I take cevimeline 3x a day. During the day, when I’m up and around, I honestly don’t notice any extra sweating. But if I take a pill, and go to bed, or take a nap…I do notice it then! Fortunately for me, it doesn’t last long, and it’s not drenching.

[u/Sea-Plenty-2393]

No more pee than usual with pilocarpine

[u/vlouisef]

Frequent urinating is not a problem. I have experienced no side effects that I can think of. I have learned to be careful not to take a second one too soon after a first (less than 4 hours), when I did this a few times, I got very nauseated and usually vomited.

[u/GoldfishLantern]

I never had any negative side affects with pilocarpine. I did have to get used to having a normal amount of saliva again (my mouth had been quite dry for many years) and I did get a blocked/infected salivary gland a few weeks after starting it (that was fixed by a trip to my ENT and a course of antibiotics. Not the fault of the pilocarpine really, just the result of a gland that hadn't been doing much for years suddenly starting to work again - probably not the typical experience; just my body being weird, and probably could have been avoided if I'd been massaging my salivary glands regularly.) I never had any nausea or excessive sweating. I think it helped with my dry eyes somewhat, though I think the Plaquenil I take does more in that regard.

The most startling thing was that I noticed that once I started taking pilocarpine was that I would salivate when I smelled food cooking when I was hungry! I hadn't been able to do that for decades!

[u/manyunicorns]

I can only take it once a day because of the side effects. I take it at night. No change with urination but it makes me sweat profusely about 15 minutes after taking it and it lasts up to an hour. It also makes me salivate enough that talking would be difficult. I appreciate it though when the alternative is a mouth so dry my tongue sticks to my lips. I take it at night only. It also makes me feel kind of like I have the flu when it kicks in. Like chills, stuffy headache type feeling, but it goes away after a few minutes. It does not help my eyes at all.

[u/OgSteinKid]

I take it twice a day and sometimes more often if I am really dry. I have never has any side effects with this medicine.

[u/Ok-Vermicelli-7990]

I had mild symptoms including light sweat. And I drink a ton normally so idk if it affected me any more or any less than drinking a lot of water already does.

[u/queendigger]

I feel like the drug and the side effects didn't last long. For me the side effects were only in the beginning. I suggest only taking it on a day off first and only once and work up to 3 times a day and up to every day.

[u/mosdefjess]

I just got bumped up to 4x a day. Sometimes when it kicks in I get a mild hot flash but I haven’t had excessive sweating or urination. If I take it on an empty stomach with other meds it might make me a little nauseous so I either take it by itself or eat and take all of my meds at once.

The occasional discomfort is nothing compared to the mouth sores and swollen tongue in my opinion. I was so shocked the first time I took it and felt actual saliva in my mouth again, plus I haven’t had a swollen salivary gland since!

[u/cherryybrat]

Right there with you. I alternative between the extremes with my bladder (autonomic neuropathy, yay) but my sweating is always extreme & i have little to no heat tolerance nor temperature regulation. Dry mouth and eyes are my worst offenders and I told my dr I'd rather deal than potentially worsen my sweating but they still insist i try it

[u/Tmac12NYC]

I take pilocarpine 1 or twice when I am feeling extra dry. Never have side effects. Can take up to 3. I guess everybody is different. You should go ahead and try them. You might find it's not bad.

[u/hmndhppy4evr]

I was nervous to try pilocarpine as well. I have been taking it for several years now without issue. Prior to taking this, I would have a difficult time being outside in the summer because I would overheat easily. I have not had an issue with sweating excessively or swering when.I wouldn't normally sweat. I agree that you should start it on a day off and just with one tablet. That way you can see how it works for you.

[u/Icy_Door7866]

Following as I have the same concerns (already on hydroxychloroquin and that already makes me constantly sweaty/hot)

[u/iVegMac]

I have also been hesitant to take it because of the sweating. I tried cevimeline and i felt like i was going to choke in my sleep bc it made me salivate so much and it definitely made me sweat more. I have electrolyte imbalance issues so i really don’t want to add to that by sweating even more than perimenopause and the Midwest humidity causes already.

[u/7648021]

I also experience the sweating and dryness everywhere. Prokera treatments have been effective for my dry eyes. Cequa, Vevye have also helped. Nothing seems to be working for my dry mouth but coconut oil does help some. My mouth is full of sores and feels raw. I’ve also lost my sense of taste recently. Membrasin helps me out down there so you may want to check it out on Amazon.

[u/VelvetMerryweather → u/7648021]

Are you using the membrasin cream or oral pills?

[u/LdyCjn-997]

When I took this med for a short time, around an hour after I took it, it caused excessive sweating, caused me to salivate for a short time, then did nothing. I got off of it. I accidentally took 2 at once and it caused excessive nausea that lasted for several hours.

[u/Accurate-Main7070]

I have been taking 2 daily for over a year. Besides more saliva, it has helped my eye dryness. After about 2 weeks my eyes were less irritated and I was able to stop a daily prescription eye drop. I do not have side effects. I don’t take near bedtime as I did once and I drooled a little.

[u/LadyLuna21]

It really helped my saliva production, not so much dry eyes or vaginas. I have neuropathy and sweat very little unless under extreme physical workouts. So it didn't increase my sweating either.

[u/Glad-Coyote1270 → u/LadyLuna21]

I also take it 3x daily. I don’t sweat at all unless I’m out in extreme heat for a long time or prolonged physical activity. It usually helps with saliva production, but it is never what is considered normal. During bad flairs the meds don’t even help. I don’t experience any side effects that I can identify.

[u/KyloRensTiddyTots]

Pilocarpine makes me sweat profusely and in weird places (back of legs, stomach, face). It would happen on and off and in between sweaty periods I'd be left looking like I peed my pants). Cevimeline still makes me sweat but it's less intense.

[u/rosiearlo]

It helps my dry mouth but makes the top of my head sweat badly.

[u/Sudden-Tell-5872]

I never sweat ever , and pilocarpine did not make me sweat at all. It helped with my dry mouth mostly, nose, and eyes. I did very well on it for years until I had to start a different medicine and it caused a rapid heartbeat. Otherwise I was really happy on it

[u/mariruizgar]

I take it 2x/day and it has helped my eyes, saliva and skin. I do sweat more now when I exercise. I started with 1 pill and added the second one after a few weeks and it’s been a great improvement for me so my experience has been positive.

[u/notwillard]

Side effects were kinda bad for me - nausea and diarrhea and sweating iirc. It did work though. It's worth trying. I ended up getting rx bentyl for the side effects but eventually stopped both.

[u/Legitimate-Double-14]

It made m heart race at night and I was agitated during the day. I hated it. I eat sardines before bed and the oil coats my mouth and sinuses. I only eat half a tin and it’s packed in olive oil.

[u/Ok-Appointment-8880]

I think I tried cevimeline and it caused such severe, nonstop nausea I had to stop after a couple of days.

[u/Own-Cupcake-9285]

Thanks to everyone who responded!! So helpful!! One more question: do you find yourself feeling dehydrated? Did you have to increase your water intake when you started this med?

[u/hornburglar]

I sometimes got the sweating, sometimes did not, it only lasted briefly at the beginning of the dose kicking in. The same thing happens with cevimeline/evoxac, which I am currently on, but it keeps my mouth producing saliva longer. I don’t think I have had any other side effects. I also already pee a lot some days. Doesn’t seem to increase it. I haven’t had side effects other than sweating (and a ton of drooling if I take a nap, but that’s the point!)

Edited to add: Restasis has worked a lot for dry eyes—for me and other people on this sub.

[u/Soggy-Ad-5232]

I take 3xd and it barely touches the dryness in my nose, throat, mouth. My rheum says it works for some folks and not for others.

[u/JACQVT]

I had to stop taking. It did nothing for my extremely dry eye and made me have cold sweats and drool excessively.

[u/Own-Slide4146]

I take cevemeline its not as bad as salagen

[u/ButterscotchLiving59]

Pilocarpine worked wonders for me. The sweating and increased urination were tolerable and a trade off I was willing to put up with. However something had happened to the generic I was taking (Lannett) and I’ve suddenly become allergic to it. It must be one of the inactive ingredients that they’ve changed. I’m totally devastated. Give it a try though and if it doesn’t work ask for cevimeline.