1. < Autoimmune Diseases

Sjogrens patients, saliva issues, flares?

Posted by cblue @cblue, Dec 31, 2023

I posted earlier and got some hugs . Thanks. But I posting to see if any other Sjogrens patients had trouble with saliva.i am hoping this is a flare, and not my saliva glands shutting down. Has anyone else with Sjogrens been non- responsive or minimally responsive to cevilemine? If so, what did you do? Did your docs figure out a way to get salivation?
It’s odd that I only get saliva from the morning dose.
My sicca symptoms are all terrible when I wake up. This is a site for all autoimmune disorders, so there may not be many Sjogrens patients on this site. So thanks for the support, but I’m hoping to hear from Sjogrens patients.

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cblue | @cblue | Jan 2 6:58am
In reply to @cpd54 "@cblue something I found very helpful at the beginning was a full on autoimmune protocol diet...." + (show)
@cpd54

@cblue something I found very helpful at the beginning was a full on autoimmune protocol diet. It was very hard to do at first because it’s so restrictive. I’ve eased up a bit now but sugar, highly processed food and grain are absolutely no good for me. I’m researching the carnivore diet but right now I’m
Just restricting myself to less than 50 carbs a day. Stiffness is way down.

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Thanks, but I have other issues with my G.I. system. I won’t go into them here but I don’t think I could go on that kind of diet. Is there a way I could look it up? I hope it helps. You sounds like it has.

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cpd54 | @cpd54 | Jan 2 7:51am
In reply to @cblue "Thanks, but I have other issues with my G.I. system. I won’t go into them here..." + (show)
@cblue

Thanks, but I have other issues with my G.I. system. I won’t go into them here but I don’t think I could go on that kind of diet. Is there a way I could look it up? I hope it helps. You sounds like it has.

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@cblue I have issues with GI tract as well, GERD gastritis, ……the autoimmune protocol diet actually helped these. I also had a food sensitivity test done and found that a lot of “healthy” foods, ie ginger turmeric eggs did not agree with me. I worked with a functional medicine doctor to do all this.

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buddabu | @buddabu | Jan 2 11:11am

Yes, I have saliva issues. I use Pilocarphine tablets 3 x day.

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buddabu | @buddabu | Jan 2 11:14am
In reply to @sennephile "I have Sjogren’s, Scleroderma and Reynaud’s Phenomenon I was prescribed Mycophenolate Mofetil twice daily for two..." + (show)
@sennephile

I have Sjogren’s, Scleroderma and Reynaud’s Phenomenon

I was prescribed Mycophenolate Mofetil twice daily for two years (high dose (360 mg.) which was hard on my system and stomach. Dose was changed to Mycophenolate Acid (which is an enteric capsule and less senstive to stomach distress). Dose has been reduced to 360 mg. once daily. Both of these meds are the generic version of CellCept. They have had no effect on saliva production. I’ll continue on latter dose until blood work indicates it’s not effective at reducing the inflammation from these diseases. I tried Civemeline for two years: no effect on saliva production. My mouth is a desert and as any one with these diseases knows, it’s more than awful, it’s horrific. Cannot talk without water, difficult to swallow, effect on teeth and gums is a serious issue though I’m fastidious about dental care. I have lost taste and smell as a result of these diseases and the dry mouth aggravates the condition dramatically I use Biotene dry mouth moisturizing spray as a fallback. Am currently experimenting with Aquoral artificial saliva protective oral spray (it was featured in one of the Sjogren’s magazines). Too early to give an opinion. It just lubricates the mouth but doesn’t cause the production of natural saliva. I saw a referral by someone on this site to a product called SaliPen billed as a high-tech mouth moistener. I ordered recently and am using in the HOPE that it will stimulate my salivary glandsmay take up to 8 months according to User Guide. It’s an electrical salivary stimulator system. It’s for use in patients with Xerostomia (dry mouth). Other than these options, I pray that I can be a candidate for Stem Cell therapy.

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Have you tried oral Pilocarphine (prescription).

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sennephile | @sennephile | Jan 2 11:37am
In reply to @buddabu "Have you tried oral Pilocarphine (prescription)." + (show)
@buddabu

Have you tried oral Pilocarphine (prescription).

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I have not heard or tried Pilocarphine. Will consult with Rheumatologist when I next see her. Thank you.

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roxanablue | @roxanablue | Jan 2 1:01pm
In reply to @ladysullivan22 "I have Sjögren's & Myasthenia. My doc put me on " Cell-cept!" NO MORE DRY MOUTH,..." + (show)
@ladysullivan22

I have Sjögren's & Myasthenia. My doc put me on " Cell-cept!"
NO MORE DRY MOUTH, Dry Skin & I have TEARS! Ask about CellCept to see if it might eooreh for you!♥️

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I'm on Celcept also for the last month and I haven't had any flares and I've tried all kinds of steroids so I'm hoping this one was going to work.

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roxanablue | @roxanablue | Jan 2 1:03pm
In reply to @cblue "Thanks so much for the info! Interesting,, that’s off label. Looks like it’s used to help..." + (show)
@cblue

Thanks so much for the info! Interesting,, that’s off label. Looks like it’s used to help people who have had transplants. . Is it an oral medicine or injection? Infusion? I’ll ask but I suspect he won’t jump from cevilemine and hydroxychloroquine to cellcept.

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Hydroxychloroqin didn't work for me

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cblue | @cblue | Jan 2 2:20pm
In reply to @roxanablue "Hydroxychloroqin didn't work for me" + (show)
@roxanablue

Hydroxychloroqin didn't work for me

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Yes, so far it doesn’t seem to work for me either. I really can take five or six months it’s been only two months 2 1/2 I don’t know what the doctor will want to do. Does prednisone stop a flare?

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Nemo1 | @nemo1 | Jan 14 7:40pm

is this autoimmune diet target inflammation?

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cpd54 | @cpd54 | Jan 15 7:05am
In reply to @nemo1 "is this autoimmune diet target inflammation?" + (show)
@nemo1

is this autoimmune diet target inflammation?

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@nemo1 I’m assuming you’re talking about the autoimmune protocol diet? Then yes it targets inflammation. https://www.thepaleomom.com/start-here/the-autoimmune-protocol/….
I’ve since started eating more like a carnivore diet, finding that a lot o vegetables gave me gas. Fruits don’t bother me. Here’s a link to a Dr that’s eats this way also…
https://www.paulsaladinomd.co/
Everyone has to find the way that works for them. I do know that highly processed foods make my symptoms reappear.

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