I have Sjogrens and dryness is progressively getting worse.

Posted by dunbun13 @dunbun13, Jan 30 11:41pm

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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That isn't used very often anymore, as it may make dry eyes worse!

"Pilocarpine is seldom used today as an ocular hypotensive agent because it irritates the ocular surface and induces uveitis, and more effective medications are readily available."

https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/pilocarpine#:~:text=Pilocarpine%20is%20seldom%20used%20today,effective%20medications%20are%20readily%20available.
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@larak

That isn't used very often anymore, as it may make dry eyes worse!

"Pilocarpine is seldom used today as an ocular hypotensive agent because it irritates the ocular surface and induces uveitis, and more effective medications are readily available."

https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/pilocarpine#:~:text=Pilocarpine%20is%20seldom%20used%20today,effective%20medications%20are%20readily%20available.

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I have dry eyes, swollen mouth glands, dry mouth, and other symptoms. I do wonder about Sjogren's.

My ANA is 1:1280, speckled pattern.

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i use pilocarpine it is fairly good i be in pain my back and knees i do not think they know how to treat it

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I used salagen over 20 years ago for dry mouth, which worked beautifully.

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So it helped your mouth dryness? What about eyes? Thanks so much

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My Dr put me on Cequa for my eyes. It has helped and I use Systane, as well.

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@larak

I have dry eyes, swollen mouth glands, dry mouth, and other symptoms. I do wonder about Sjogren's.

My ANA is 1:1280, speckled pattern.

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I’m not a doctor, this is just a support group. Having said that….Why don’t you see a rheumatologist? Noting your other symptoms would be important. If it is Sjogrens , a significant number of Sjogrens patients don’t get diagnosed until lip biopsy. Depending on where you live, it can take time to get appointments with professionals, who do that kind of thing.

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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 was on pilocarpine for decades! It stimulates saliva production within an hour, and it also helped my eyes. I had no side effects. I used it twice a day.

The past two years, I began experiencing times of low blood pressure, and gradually dropped all medications that “might” be causing it. The last one to go was pilocarpine, just out of curiosity. I’ve been off it for several months, and have just begun have slightly dry eyes. I may go back on it, after my rheumatologist visit next week.

I’d say, try it out. You’ll know soon enough if it works.

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