I'm currently awaiting some test results and don't yet have a diagnosis, but I'm trying to get a handle on how I can treat these horrible symptoms of dryness. I seemed to develop dry everything over the course of a week and it had severely impacted my life. I can't talk for more than about 30 seconds before my mouth dries up, even when I'm chewing gum.
I have heard lots about Evoxac and Salagen on these boards and it seems the majority have good luck with at least one of these drugs.
I would love to get relief from this and I was wondering what your experiences were with these drugs. Do they provide good flow, like enough to talk without discomfort? I'm a grad student and often have to teach classes and give talks and I would give almost anything to be able to speak normally and without extreme dryness.
What about ubiquinol, does this actually work for anyone? I'm thinking of buying some but don't want to waste my money or risk altering future blood tests by taking unnecessary supplements.
Thanks for your input :)
Hi Deseree,
About the exact same thing happened to me as you describe. Dryness came on suddenly and severely! I could not talk or sleep for more than 10 minutes! I ended up going to the ER it was so bad. I was able to get an apt with a rheumy about a week later who did put me on cevimeline right away! Thatisthe generic form of Evoxac. I started taking it and felt relief with the first pill and it has gotten better over the last 5 weeks I've been on it! It is a life saver for me. I break out in extreme hot flashes every couple hours, even wakes me from sleeping, but I will take the heat over the dryness. I do worry a bit because I barely sweat so I'm not sure if that can cause problems, but it's much better than waking up every ten minutes because my dry throat sticks shut.
I wish you the best, I am still learning to deal with this myself, it has been a challenge, so much to learn.
Oh and I am not certain if ubiquenol helps, I started taking it a couple weeks ago but that was after I already was on cevilemine and felt relief from that, sorry I can't help with that. But the Cevimeline definitely helped me.
Good to hear something worked for you! I'm still hoping I may have some other condition as all my blood work has come back negative so far, but I just don't know what else could be causing this and want to know that there's a way to get relief out there!
Cevimeline has been crucial to getting to an "almost normal" state for me - much better results (again for me) than with salagen/pilocarpine.
I am newly diagnosed, and extreme pain in what turned out to be damaged parotid glands was my first major symptom. Because I am new to treatment, I have so far only been prescribed Pilocarpine, which did enough that I would want to stay on it, but it was no miracle drug. Because it wasn't great, I was switched to Exovac, which is only a tiny notch above the Pilocarpine. I do feel a bit of saliva about an hour after taking it, but I still have a 2 hour morning cough, trouble swallowing food, trouble speaking, etc. For me, gum helps more than anything else but I hate to chew it because I am an "agressive" gum chewer. Not a good look. For what it's worth, these meds may not help me much because I don't know that I CAN produce more saliva. It took me two years to convince my primary to order imaging (everyone thought my jaw pain was TMJ, but I knew it wasn't), and I am at the destructive stage in my parotids and submandibular glands (innumerable sialectases up to 9mm).
Hello, sorry for what you are going through, it is frustrating and sometimes frightening.
As I asked someone in another message, is there anything new in your life which could be causing the dryness, a new food, paint in your home, etc.? Barring a change that might be the culprit, have you tried any OTC remedies other than gum such as toothpaste and mouthwashes for dry mouth?
I don't know what your water intake is or should be, but do know that I am a gulper and have had to learn to sip, when I gulp a lot I get more dry more quickly.
As for Evoxac, it has been a game changer for me. My glands work, but don't seem to really push out much saliva, the drug changed this an allows me to eat and swallow and digest food better. I have had what I would say are few side effects, though I take a much smaller dose than prescribed (with my doc's permission). If I take 30 or more mg per day I sweat like an animal, 15 mg is enough for me.
Thank you everyone for your replies. I have been sipping water a lot more than I used to before all of this started but it really doesn't help. If anything, it sometimes takes my mouth feel even more dry. Weird I know, but it does. I now use biotene dry mouth wash before bed and it seems to keep the horrible dryness minimized during the night but I still wake up needing more. I have two humidifiers on in my room and I run the shower at night for ten minutes to get steam into the bedroom so I can sleep. But the thing that is the worst is that I can't speak without my mouth going bone dry. I chew gum while speaking to people because it helps, but it's still miserable. I'm just so scared this will get worse and worse until I literally have no function in my glands left. I can't imagine being 100% dry the rest of my life, certainly most people don't ever progress that far, do they?