1. < Autoimmune Diseases

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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tootiredtoknit | @tootiredtoknit | Feb 3 11:17am

My mom has Sjogren's and takes pilocarpine. She says it helps her eyes some, but her mouth is still quite painfully dry. Her doctor gave her some lidocaine drops for her tongue and she drinks a lot of fluids and sucks on sugar-free candies.

I found coconut water to be very soothing when I had a combination of thrush and inflammation from Paxlovid. It's also very high in potassium, which aids absorption into muscles and tissues.

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sbtheplumber1 | @sbtheplumber1 | Feb 3 2:59pm

I was on pilocarpine about 3 years and switched to cevimeline because of the sweating then find out cevimeline is worse. I use a gel drop in my eyes at night to keep them moist since I’ve torn the tissue on my eye from dryness and just got put on Mio drops for day time due to a vitreous gel detachment.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 3 7:21pm
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.

Jump to this post

@larak I’m sorry that you haven’t yet found a good rheumatologist. There are some great ones out there and most people are getting good care. There are 2 organizations that should be able to help you find a doctor, if you’d like.
https://rarediseases.info.nih.gov/
https://rarediseases.org/
Will you try calling them on Monday and then let me know what you learn?

REPLY
Lara K | @larak | Feb 3 7:49pm

There is a NORD near-ish to me. I'll call this week and see what they say.

REPLY
mayomayo8171948 | @mayomayo8171948 | Feb 3 9:17pm
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.

Jump to this post

I was treated aggressively with very toxic drugs for nearly three years by two different rheumatologist before I went to a third rheumatologist who teaches at the local medical school. After a very thorough investigation and examination, he told me I didn't have rheumatoid arthritis!!!!! According to him, 5% of normal people have POSITIVE RA FACTOR in their blood but DO NOT HAVE RHEUMATOID ARTHRITIS!!! So, you might think about finding a NEW rheumatologist that is fresh out of a residency program!!

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mollyquilter | @mollyquilter | Feb 5 10:07pm
In reply to @larak "I have dry eyes, swollen mouth glands, dry mouth, and other symptoms. I do wonder about..." + (show)
@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.

Jump to this post

You can get a blood test to find out, although they are not 100% reliable. If you have the symptoms, you have Sjogrens; my mother had it and 2 sisters and myself have symptoms of it. My symptoms are Burning Tongue (look up the picture/chart of that on the Mayo Clinic chart of tongue pictures. Along with that we have Burning Vulva, Dry Eyes and Dry Mouth. Amitriptyline at night gets rid of the burning vulva part and I use Thera Tears (my eye dr.'s choice) for day and the nighttime ones before bed. OraCoat's Xylimelts keeps the dry mouth under control at night.

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2 replies
Lara K | @larak | Feb 5 11:02pm
In reply to @mollyquilter "You can get a blood test to find out, although they are not 100% reliable. If..." + (show)
@mollyquilter

You can get a blood test to find out, although they are not 100% reliable. If you have the symptoms, you have Sjogrens; my mother had it and 2 sisters and myself have symptoms of it. My symptoms are Burning Tongue (look up the picture/chart of that on the Mayo Clinic chart of tongue pictures. Along with that we have Burning Vulva, Dry Eyes and Dry Mouth. Amitriptyline at night gets rid of the burning vulva part and I use Thera Tears (my eye dr.'s choice) for day and the nighttime ones before bed. OraCoat's Xylimelts keeps the dry mouth under control at night.

Jump to this post

The dry eyes is the worst for me. And I've developed atopic dermatitis and am allergic to propylene glycol! (In the majority of eye drops. 🤣)

OptiFree PF works briefly for me. I've got to find heavier-duty drops for evening.

REPLY
2 replies
marye2 | @marye2 | Feb 6 6:04pm

I am 71 and have noticed that I really have to attend to hydration these days. Helps the skin, eyes and mouth when I do the right things.

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1 reply
sbtheplumber1 | @sbtheplumber1 | Feb 8 1:20pm

Has anyone with the Sjogren’s had trouble with stinging lips or red, painful, burning ears ? My Ent is investigating the red ear or from what I’ve read burning ear syndrome

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1 reply
cpd54 | @cpd54 | Feb 9 6:23am
In reply to @larak "The dry eyes is the worst for me. And I've developed atopic dermatitis and am allergic..." + (show)
@larak

The dry eyes is the worst for me. And I've developed atopic dermatitis and am allergic to propylene glycol! (In the majority of eye drops. 🤣)

OptiFree PF works briefly for me. I've got to find heavier-duty drops for evening.

Jump to this post

Have you tried Oasis PF drops?

REPLY
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