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What helps with dry mouth with Sjogren's?
My 54 yr old son was just diagnosed with Sojourns disease
Extremely fatigued, very dry mouth, joints ache
Nothing help. Any suggestions?
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@fairn
I thought I read that you had no positive bloodwork, but do have Sjogrens. I reread and see what I missed! Thanks for taking a minute to reconnect about that post.
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1 Reaction@justrosie
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!
Sharon, I think Migraineelaine meant that it stinged her tongue, I am guessing. It might have been a typo.
The Rheumatologist I saw prescribed me Pilocarpine-10 mg and it helps some, doesn't totally take it away. Yes, dry mouth makes swallowing difficult and talking difficult. I have had all kinds of tests -throat specialist looked at my throat, swallowing test, gastric emptying test, and everything comes back normal. My next stop is ENT Dr. to see if ENT Dr can do any other types of tests or procedures to explore my throat. Has anyone had any experience with the ENT DR and getting any type of procedure or test about your throat? If so, what did you have done and what were your results from the ENT Dr? I have CVID and Hashimoto's Disease and a thyroid nodule. I am seeing a Speech Therapist for my throat/swallowing issues and I have exercises to do. It is very frustrating and I do use Biotene mouthwash and it helps some too. I drink a lot of water during the day, as I am very thirsty too. Thanks!
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1 Reaction@animallover25 Thanks for all the info! I appreciate it. I really do need to find a good ENT. I don't really trust the one who prescribed the mupirocin so haphazardly. Also, when I went to him because of a salivary gland infection (I had no idea that's what it was but it was SO painful!), he did treat that with antibiotics and it went away, but he also said there was no use in doing any tests because there's no cure. Well, yeah, but when I thought about that later, I thought, there's got to be some treatments that would at least make me feel a little better. He offered absolutely nothing but drinking fluids and applying heat.
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1 Reaction@fairn Hi, all my test came back with positive results for Sleraderma, Sjögren's, lupus was on the low numbers thank god! I have Raynouds disease as well. Another test showed positive 2 times for antiphospholipid syndrome and I've had many mild ischemic strokes as well. I really think you need a new dr. And retesting. Just my opinion.. Good luck these issues are no joke.
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1 ReactionFor dry mouth I use Rx pilocarpine three times a day.
For overnight relief I use Xilimelts…they last up to 6 hours.
Both have been a game changer for me!
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2 Reactions@justrosie CONSIDER GETTING A SECOND OPINION.
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2 ReactionsBiotene dry mouth products are helpful. There are prescription meds but I haven't tried any.
I use Xylomelts at night, 2 of them. It works for me 90% of the time. I tried Pilocarpine but I couldn't handle the side effects. Looking for a prescription med for use during the day. I use mints and drink 8 glasses of water a day.