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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patient101 | @patient101 | Mar 3 8:06am

I have been on pilocarpine for decades and it works. I went off it for a couple of months, and got dry eyes and mouth, so I’m back on it.

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denverni | @denverni | Mar 3 9:53am
In reply to @cpd54 "@burlingtongirl I have a scalp rash sometimes. But I haven’t had it since I was diagnosed..." + (show)
@cpd54

@burlingtongirl I have a scalp rash sometimes. But I haven’t had it since I was diagnosed with SS and changed my diet. If I will only eat meat, some vegetables and fruit, my SS symptoms seem to go away. I had a food sensitivity test done and avoid the foods I’m sensitive to. I also follow the autoimmune protocol diet too. When I eat the wrong foods I can tell.

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Hi Burlington girl,
I have secondary sjogen due to my rheumatoid arthritis.
The ceviline (EVOXAC) has helped a little with dry mouth. I restarted taking it about 3 years ago. It really helped with my dry eyes. The evoxac does not helped like it used to. I take quite a bit of medication now so I think some of the excessive dry mouth is due to that.
Water, dry mouth products and good sleep helps me. Welcome. Wishing you the best.

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1 reply
ebero | @ebero | Mar 3 2:18pm
In reply to @burlingtongirl "Hi there, I was diagnosed in 2017 with Sjogrens. I have no saliva to speak of...." + (show)
@burlingtongirl

Hi there, I was diagnosed in 2017 with Sjogrens. I have no saliva to speak of. I carry water wherever I go or else I chew sugarless gum. I have flares quite often so I am trying a healthy diet, low carb and no sugar. I break out in bumps on my head and they scab over quickly. This past week I got a large bump on my tongue and other ulcers in my mouth. I was wondering if the bumps and ulcers were related to the Sjogrens.

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I've read that the bumps are related to the Sjogren's....

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burlingtongirl | @burlingtongirl | Mar 4 9:03am
In reply to @cpd54 "@burlingtongirl I have a scalp rash sometimes. But I haven’t had it since I was diagnosed..." + (show)
@cpd54

@burlingtongirl I have a scalp rash sometimes. But I haven’t had it since I was diagnosed with SS and changed my diet. If I will only eat meat, some vegetables and fruit, my SS symptoms seem to go away. I had a food sensitivity test done and avoid the foods I’m sensitive to. I also follow the autoimmune protocol diet too. When I eat the wrong foods I can tell.

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Thank you for replying. Does anyone take prednisone when they have a flare?

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1 reply
burlingtongirl | @burlingtongirl | Mar 4 9:07am
In reply to @denverni "Hi Burlington girl, I have secondary sjogen due to my rheumatoid arthritis. The ceviline (EVOXAC) has..." + (show)
@denverni

Hi Burlington girl,
I have secondary sjogen due to my rheumatoid arthritis.
The ceviline (EVOXAC) has helped a little with dry mouth. I restarted taking it about 3 years ago. It really helped with my dry eyes. The evoxac does not helped like it used to. I take quite a bit of medication now so I think some of the excessive dry mouth is due to that.
Water, dry mouth products and good sleep helps me. Welcome. Wishing you the best.

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Thank you

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mdamiani57 | @mdamiani57 | Mar 5 8:08am

I keep sugar free gum with me all the time and lozenges made for dry mouth and before bed I gargle with a mouth wash for dry mouth.

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karenshope | @karenshope | Mar 5 8:57am
In reply to @burlingtongirl "Thank you for replying. Does anyone take prednisone when they have a flare?" + (show)
@burlingtongirl

Thank you for replying. Does anyone take prednisone when they have a flare?

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I was recently in the hospital for something unrelated. I noticed I had a major improvement in Sjogrens symptoms while on heavy hydration & steroids.

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1 reply
cblue | @cblue | Mar 5 11:15am
In reply to @karenshope "I was recently in the hospital for something unrelated. I noticed I had a major improvement..." + (show)
@karenshope

I was recently in the hospital for something unrelated. I noticed I had a major improvement in Sjogrens symptoms while on heavy hydration & steroids.

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Prednisone is used temporarily as a bridge. There are other medications that (hopefully) have a long term effect on calming a Sjogrens flare. One is Azathioprine. I've also heard Cellcept is used. There may be others. Prednisone has significant long term adverse effects and it MUST BE tapered down, or you will have serious complications. (Again I feel I need to say I'm not a doctor. I'm just repeating what I've heard from Rheumatologists)

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karenshope | @karenshope | Mar 5 1:12pm

Thank you!! That’s good information.

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rcbea | @rcbea | Mar 10 8:27pm

Ask your doctor for pilocarpine, that may be more effective for you. Some days are worse than others for dry mouth.

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