I have Sjogrens and dryness is progressively getting worse.

Posted by dunbun13 @dunbun13, Jan 30, 2024

My question ….. is anyone here taking Pilocarpane. I would like to know about this medication. Trying to get more knowledge before asking the Dr. About it.

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sbtheplumber1 | @sbtheplumber1 | Feb 21, 2024

In reply to @penn "HELLO sbtheplumer, I take Pilocarpine it's fair. But if you can't find anything else that helps..." + (show)

I’m going to try the cevlimine again if it don’t work I might have to go back to the pilocarpine

1kay2 | @1kay2 | Feb 21, 2024

In reply to @sassenach "I use Refresh Plus and sometimes Refresh Celluvisc ( but only before bed because it leaves..." + (show)

I use systane bion (no preservatives) tears for dry eyes. My eyes reacted to preservatives in regular eye drops. This is great.

marpar123 | @marpar123 | Feb 21, 2024

I was prescribed pilocarpine- 2 to 3 tablets daily-for extreme dry mouth. It worked very well, stimulating my salivary glands so I no longer had to sip water frequently. I occasionally produced SO much saliva that I began drooling.
Very soon, however, since I also (still!) suffer from hot flashes at age 69, the pilocarpine made me have UNBEARABLE night sweats and even day sweats to the point of having to completely change clothes several times a day or night.
Cutting the dosage to 1 didn’t help, so I had to stop using that and just use Xylimelts, other losenges, dry mouth sprays…, and drink lots of water again.
Best wishes to you as you learn about All the Effects Sjogren’s has or will have on your body and Life!!🥰

marpar123 | @marpar123 | Feb 21, 2024

In reply to @larak "I have a high titer (1:1280), speckled ANA. But no Sjogren's antibodies, which I'm aware a..." + (show)

@larak

I have a high titer (1:1280), speckled ANA. But no Sjogren's antibodies, which I'm aware a lot of Sjogren's patients don't have.

My dry eye is diagnosed and treated by a specialist. I'm trying to find an oral surgeon who takes my insurance for the lip biopsy. I've seen - no kidding - 3 rheumatologists. I was referred to the first because of the ANA and a (at the time) 4.7 cm ascending aortic aneurysm.

Rheumatologist in Boston are NOT diagnosticians. They want you to walk in with a diagnosed condition for them to treat. A high ANA and suspected vasculitis isn't enough. Oh, I have elevated complement proteins (C3 & total) and elevated cytokines (ILs- 2, 6, & 10). None of it matters.

So I got whole genome sequenced by a CLIA certified lab and it turns out that I have pathogenic variants on HLA-B for Behçet's, a vasculitis. Which might show in ANA, but wouldn't show in the common antibodies they run.

My CV surgeon referred me to yet another rheum I'll be seeing in April. She (supposedly) specializes in vasculitis, so maybe I'll have a different result.

One of those earlier rheums tried to gaslight me about my ANA being "normal" because the test he chose returned that result. Well, he ran an ANA test that actually specifically tests all the individual antibodies (Ro, Smith, dsDNA, etc. etc.). Some multiplex ball ELISA test, not the industry standard indirect immunofluorescence antinuclear antibody test (IF-ANA).

That ball test stinks, but it's cheaper for hospitals:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628865/
"other is antigen specific assay that detects ANA and reacts with a single autoantigen i.e. dsDNA, SS-A/Ro, SS-B/La, Scl-70, Sm, Sm/RNP etc. In antigen specific assay multiple antigens are coated on to microtitre plates, usually a combination of SSA/Ro, SSB/La, Sm, and U1-RNP, with many also including Jo-1 and Scl70. This new test is both highly specific and sensitive and substantially decreases the time involved when screening large numbers of patient samples. The test is simple to perform, can be automated and does not require highly trained operators..."

So, either that rheumatologist didn't understand the difference between ANA tests or he was gaslighting me. Either is bad. He was the third.

The second was a second opinion on the first (who did nothing to investigate vasculitis beyond discovering the elevated complement proteins, which she also ignored). The second was also out the door the next week for a family emergency, which I should have been told. Because you can imagine how useful that consult was. But hey, they got paid.

Basically, I have had to be my own diagnostician. Specialists specialize and do not look outside their box. Rheumatologists, from my limited experience, are about the laziest specialists out there.

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I don’t know about “laziest”, but I agree that getting the correct Diagnosis and then finally getting Treatment(s) that actually work( s) takes Years! I,too, saw 3 Rheumatologists before Finally going to another city to one my cardiologist recommended. He, his PAs and NPs have been Excellent in diagnosing and treating my multiple Sjogren’s problems( along with the pulmonologist, cardiologist, ophthalmologist, periodontist, gastroenterologist, podiatrist and ENT specialist that I now see on a regular basis since 2020!)
Best Wishes to you on your Sjogren’s journey!!

Becky, Volunteer Mentor | @becsbuddy | Feb 21, 2024

In reply to @marpar123 "I was prescribed pilocarpine- 2 to 3 tablets daily-for extreme dry mouth. It worked very well,..." + (show)

@marpar123 Welcome to Mayo Clinic Connect! And thank you for your post.
Can I ask how you found this site?

penn | @penn | Mar 1, 2024

Hello JMB,
The plugs never worked.
I don't have Carpal Tunnel, It's my Small Fiber Neuropathy. Just wondering if anyone has that same issue?

jamiemary65 | @jamiemary65 | Feb 6 9:03am

I have gotten worse with having COVID a number of times. Anyone else experience this?

jamiemary65 | @jamiemary65 | Feb 6 9:08am

I took that medication, made me not be able to breathe, did better without. And I was at a Sjogrens group in Fairfax, VA where they said people who have lung ailments such as Asthma experience what I did. So, I don’t take anything except an IVIG and that has helped sustain me and guard me from infections.

asf1234 | @asf1234 | Feb 7 6:50am

I know this doesn’t answer your question but, have you tried Biotene and avocado oil? You can tell me to shut up if you want too. I’m not at the stage in my progression of Sjorgren’s. Praying for you.