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Has anyone used the oral medication for dry mouth (Sjogren's)?
Autoimmune Diseases | Last Active: Mar 18 6:52am | Replies (59)Comment receiving replies
I started pilocarpine tablets 5g three a day about a month ago. Going to keep taking it a couple more months, but so far, I don't really see any difference or improvement at all. Right now, I'm on Vevye for dry eyes and also am using blood serum eyedrops. That is helping somewhat.
But the worst of all my Sjogren's (which, after complaining about to doctors for 12 years, FINALLY got diagnosed!) is the dry dry dry nasal passages/sinuses. Man! So dry that the normal mucus just stays up there in clumps making it hard to breathe -- especially when I'm trying to sleep. 🙁
An ENT a few years ago prescribed mupirocin ointment. In a strange way. He said to squirt about a third of the tube into a bottle of saline solution that you buy at the store and shake it up. Then squirt it up my nose at least once a day. AND IT WORKED! However, I learned later (this was during the pandemic, so we were on our own a lot ... it seemed) that it's not supposed to be used forever, and I had used it for FOUR YEARS! I didn't know and the ENT didn't say anything about how long to use it. Oh, well. But when I stopped, all the problems with my nasal stuff came right back.
I really don't know what to do. I'm miserable. I started using a humidifier in my bedroom at night and will continue at least through the winter months. I also use Xlear sinus spray, which is nice, but doesn't last long.
Replies to "I started pilocarpine tablets 5g three a day about a month ago. Going to keep taking..."
Hi, I have CVID-Common Variable Immune Deficiency- I get anywhere from 6-8 sinus infections a year! I'm on subcutaneous infusions weekly now, so I am doing better, I get around 3-4 now a year, which is better. I see a Rhinologist here at Cleveland Clinic, she is wonderful, a specialist in the ENT field. She has me doing a sinus rinse daily- the netti pot or navage or the squeeze bottle and then after that I use Ayr Nasal Gel on a qtip and then I gently put it in my nose and apply the gel inside my nose and I do the gel 2 x daily. She did prescribe me the Mupirocin first and told me to use it 2 times a day for 2 weeks on the qtip and apply it to inside of my nose. My nose is very dry, the key is to keep it moist! I thought I had Sjorjen's and went to Rheumatologist and she said No, I don't have it. I also have Hashimoto's too. The navage is great, a lot of cleaning the supplies afterwards. I prefer the netti pot, is my favorite with Xlear solution that I purchase online-it doesn't burn my nose like the normal solution powder. Try using a netti pot, navage or the squeeze bottle daily to rinse your nose out. The Ayr gel is over the counter, so you can go buy that at a pharmacy or grocery store. It comes in a tube. I have the Xlear nose spray too, Dr. prescribed me flonase which I use also- I'm using both. I have an air purifier and it really helps, I got a medical grade one-Austin Air- pricey but it is worth it. Make sure you are cleaning out your humidifier, so mold doesn't grow. Switch to another ENT Dr, request for a CT scan if you continue to have problems, go to a Functional Medicine Dr to request for food testing/allergy or intolerance and get allergy testing at regular allergy Dr, both are needed, as you get 2 different results back. I am gluten free, dairy free and now egg/soy free. Look for a Rhinologist, specialist, if you can find one in your area. What are you allergic to? I'm allergic to a lot outdoors-trees, grass, mold, pollen, ragweed. I wear a mask when I am outdoors now, and it has helped tremendously. If you are like me, then I would suggest the mask. Hope this helps you out! Hope you feel better!
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@justrosie Its so frustrating isn't it? Thanks for your story. I will mention something that worked for my dry eyes. My eye doc put in some "punctual plugs." Best thing is to Google it to explain it. A very simple procedure. I still have dry eyes, but has improved immensely since the plugs.
The mouth is a whole nothing story. I wake up so congested (throat mucus) from the severely dry mouth in the night. Probably worse than the Sahara desert. I am hoping medication might help. I want to get as much feedback if possible to see if it is worth it.