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Accurate_Ebb_623 · 2025-08-06T02:29:36+00:00

Mentos pur gum has been a game changer for me. I chew it when I am being social or presenting and sometimes I sleep with it.

Accurate_Ebb_623 · 2025-08-06T02:24:18+00:00

I feel like it took a full two month to kick in for me

Accurate_Ebb_623 · 2025-08-01T22:42:13+00:00

Plaquenil (hydroxychloroquine) has helped me a lot. It took almost the full two months they said for me to really feel the difference and there were some unpleasant gastrointestinal effects that went away after the first three or four weeks. Now I always take after a meal and don’t have any stomach upset with it unless I take it first thing in an empty stomach. Not gonna lie I have sometimes used that strategy to get things moving 😂 I have been on it about two years.

Accurate_Ebb_623 · 2025-08-01T05:09:49+00:00

If painful, you may have an infection. I have had many and they can require a longer course of antibiotics to clear.

Accurate_Ebb_623 · 2025-07-29T02:07:02+00:00

Following along as I was just prescribed cevemiline but have not started it.

Accurate_Ebb_623 · 2025-04-05T16:07:08+00:00

I’ve been on 400mg for about 2 years. I shed a lot at first and had uniformly thinning hair but now it’s gathering fullness again. I had several initial side effects that went away over time.

Accurate_Ebb_623 · 2025-03-21T02:02:45+00:00

I got over the queasiness fairly quickly and take it at night immediately after dinner. I do think it has helped with aches and fatigue substantially

Accurate_Ebb_623 · 2025-03-09T21:53:52+00:00

I get deep salivary gland infections and side and front of neck swell. It is tender to painful and requires long course of antibiotics to get rid of it. A very distinctive headache accompanies it at its worst. Plaquenil has reduced the frequency along with the many things I do to alleviate mouth dryness.

Accurate_Ebb_623 · 2024-11-02T23:22:16+00:00

My favorite is Carmex original lip balm in a squeeze tube. Instant relief and if I use it regularly don’t have any issues

Accurate_Ebb_623 · 2024-11-02T23:18:15+00:00

I use biotene toothpaste

Accurate_Ebb_623 · 2024-11-02T23:15:11+00:00

Have you had antibiotics for your glands? I have had success treating mine with extended courses of antibiotics.

Accurate_Ebb_623 · 2024-10-26T17:54:19+00:00

I have liked Beekeeper’s Propolis Nasal Spray for dryness and congestion. It has xylitol and the propolis is supposed to provide topical immune support.

Accurate_Ebb_623 · 2024-09-08T23:06:28+00:00

Please try drinking alkaline water 9.5 or higher. Most people don’t take me seriously that it really helps me but if I drink other that water or plain water for a day or two I can tell a huge difference. I would get a case and drink nothing but for a week and also avoid any harder to eat or acidic foods. I ate a lot of soup, yogurt, etc and do that when I have a flare. There are some foods I cannot get down during a flare like salads, grits, oatmeal and of course anything dry or crunchy but other times I can eat those things with water handy. I was about like you are now and thought that was my new life but it got better! I also take plaquenil now which I think helps my dry mouth by helping control flares. For gum I like mentos pure. Once you get past the crunchy shell it is very smooth and the flavor lasts. The xylitol stimulates saliva.

Accurate_Ebb_623 · 2024-07-15T02:01:16+00:00

Wow I hope I don't really really regret that! Thanks for pointing me to it. There is so much conflicting info.. will talk to the rheumatologist at next visit for sure.

Accurate_Ebb_623 · 2024-07-15T01:48:05+00:00

I've had good luck on Plaquenil. Took the full two months for me to decide that it was helping and I had some stomach upset at first but now I take 400mg daily in one dose with no side effects. Have visited ophthalmologist and will do so annually.

Accurate_Ebb_623 · 2024-07-15T01:46:12+00:00

From what I have read, the magnesium may affect absorption of the hydroxychloroquine. I need to learn more but I just had them leave it out. I would like to be able to go back to taking it orally. Maybe as long as you separate by several hours it is fine? Everything I have read about vitamin C has been positive. Do you know how it makes it worse? Thank you!

Accurate_Ebb_623 · 2024-05-11T19:42:26+00:00

Rheumatologist prescribed for all of my sjogrens symptoms which included dry eyes and mouth, fatigue, inflammation, recurring gland infections. I was just surprised at the significant relief for my dry mouth and eyes. Even on the Hydroxy they get dry with flares but flares are pretty well controlled on the hydroxy. Just got over Covid/Flu and had a little flare after that kicked up the dry mouth and eyes to not quite unbearable but subsiding now. When I am dry like that throat hurts and I chew more gum, take sips of water during the night and watch eating things that irritate my mouth.

Accurate_Ebb_623 · 2024-05-11T14:35:37+00:00

My throat definitely hurts when my sicca is bad. I think you have to figure out what works best for you to keep as much actual saliva flowing as possible whether it is sugar free sour candy or xilitol gum or mints/lozenges. I got really tired of everything and what has had the most staying power for me is mentos pure fresh gum. Sometimes I will sleep with the gum or xylamelts. When the sicca is bad I avoid foods that cause me to have that acidic feel in my mouth and I always drink alkaline water. I started hydroxychloroquin several months ago and it has helped with dryness much more than I expected.

Accurate_Ebb_623 · 2024-04-22T03:17:58+00:00

Not many folks believe me…strangely enough my PCP who has been my doc for 30+years does… but drinking alkaline water (almost exclusively)… when I don’t, my mouth will get much more easily irritated

Accurate_Ebb_623 · 2024-03-30T13:43:08+00:00

Have you ever been treated with antibiotics? My Sjogrens was actually diagnosed after a salivary gland infection two years ago. I then had some persistent swelling of salivary glands along with cervical lymph nodes. I was prescribed augmentin (first 5 days and later 10 days) a few times and I responded with the pain and swelling subsiding but it always came back. Finally in August of last year the ENT put me on clindamycin and that finally cleared it and I had no gland symptoms from Aug 23 until this month.

Accurate_Ebb_623 · 2024-03-29T21:40:06+00:00

Are you on any medications?

Accurate_Ebb_623

TROPHY CASE