Tested positive on Early Sjogren's

[Dmitri]

These are the first two specific autoantibodies that I tested positive for after endless columns of negative ones, and may provide clues to the underlying causes of my symptoms.

I have a dry mouth (not severely so) and whenever I eat, I crave and drink massive amounts of water right away. For example, a simple sandwich has to be downed with many cups of water or else I feel discomfort in my abdomen. I always had a feeling that my body was generally dry throughout. Not sure regarding my eyes, they do burn, but the sensation is mild compared to elsewhere in the body, so I tend to ignore it. Having small fiber neuropathy may also be relevant since it's being associated with Sjogren's more and more.

I was told that I can't have a solid diagnosis of Sjogren's without a positive inner lip biopsy. I was hoping that this test would remove the need for that, because of potential risks. My oral mucosa is a problem area and I'm not sure if I want to do such an invasive procedure on it.

 

[used_to_race]

I also had a positive on that panel, although mine was the Salivary Protein IgM. I don't have any classic Sjogren's symptoms. Have you discussed potential treatments with anyone? Seems like you could actually get access to real treatments here. I would do the biopsy. What sort of problems do you have with your oral mucosa?

 

[Diwi9]

I'm positive on one of the Salivary Proteins (I think it was IgG). It seems that most classic Sjogren's symptoms do not develop until well into the disease, and neither do some of the classic biomarkers. I found this presentation by Dr. Brent Goodman extremely helpful in understanding why SS can be difficult to diagnose and that SS involves much more than just dryness:

 

[Dmitri]

I also had a positive on that panel, although mine was the Salivary Protein IgM. I don't have any classic Sjogren's symptoms. Have you discussed potential treatments with anyone? Seems like you could actually get access to real treatments here. I would do the biopsy. What sort of problems do you have with your oral mucosa?

If it means access to immunotherapy rather than the standard garbage like gabapentin, then it would be very valuable to have confirmation. Yesterday, I started a different biologic, rilonacept, for Behcet's. Still too early to tell if it has any effect, and there's no studies on it or other il-1 inhibitors for the treatment of Sjogren's.

My oral mucosa is painful and tender, prone to ulcers and geographic tongue. Even the slightest abrasion in my mouth is harmful.

I'm positive on one of the Salivary Proteins (I think it was IgG). It seems that most classic Sjogren's symptoms do not develop until well into the disease, and neither do some of the classic biomarkers. I found this presentation by Dr. Brent Goodman extremely helpful in understanding why SS can be difficult to diagnose and that SS involves much more than just dryness:

Treating Sjogren's as "just dryness" is indeed misrepresentative, just like the view that CFS is just fatigue. The video is very informative, and the case brought up with the patient who had neurological symptoms without dryness having a positive salivary gland biopsy makes a compelling case for having the biopsy done. My symptoms also appear to be predominantly neurological and the dryness isn't that significant by comparison, which is why I stopped pursuing a Sjogren's diagnosis despite having suspected it for years. I tested negative on the SS-A and SS-B antibodies, as well as the entire ENA panel. Only ANA kept coming back positive.

This has been almost lifelong for me, so "early" could be a misnomer.

 

[Strawberry]

Only ANA kept coming back positive

Which type/pattern?

 

[Dmitri]

Which type/pattern?

Speckled, 1:160. It came back the same way from two different labs and several years apart. It was treated by my physicians as nothing up to now.

 

[Strawberry]

Hmm, I'm speckled too. Dry eyes, dry mouth, geographic tongue/burning mouth... I may look into this also.

Thank you!

 

[used_to_race]

If it means access to immunotherapy rather than the standard garbage like gabapentin, then it would be very valuable to have confirmation. Yesterday, I started a different biologic, rilonacept, for Behcet's. Still too early to tell if it has any effect, and there's no studies on it or other il-1 inhibitors for the treatment of Sjogren's.

Very interesting. Yeah I think that many people with ME/CFS could benefit from different immunomodulators/biologics dramatically depending on their particular immunophenotype. I'm working on convincing my docs to let me try some of this stuff actually. Never heard of anyone using an IL-1 inhibitor for anything like ME/CFS before, that should be interesting (although you state it's for Behcet's). Keep us posted.

My oral mucosa is painful and tender, prone to ulcers and geographic tongue. Even the slightest abrasion in my mouth is harmful.

This is not uncommon in Crohn's disease, even in the absence of severe intestinal symptoms. Have you had a colonoscopy or checked up this avenue?

Only ANA kept coming back positive.

I too have elevated ANA and all these symptoms with very little to show for it specifically. My only positives have been the Salivary IgM, ANA 1:80 Speckled, elevated Calprotectin, and elevated Ca/Calmodulin Kinase II. At this point I'm 99% sure I'd respond to a treatment protocol geared towards IBD such as a TNF inhibitor or even some immunosuppressants.

 

[Dmitri]

Very interesting. Yeah I think that many people with ME/CFS could benefit from different immunomodulators/biologics dramatically depending on their particular immunophenotype. I'm working on convincing my docs to let me try some of this stuff actually. Never heard of anyone using an IL-1 inhibitor for anything like ME/CFS before, that should be interesting (although you state it's for Behcet's). Keep us posted.



This is not uncommon in Crohn's disease, even in the absence of severe intestinal symptoms. Have you had a colonoscopy or checked up this avenue?



I too have elevated ANA and all these symptoms with very little to show for it specifically. My only positives have been the Salivary IgM, ANA 1:80 Speckled, elevated Calprotectin, and elevated Ca/Calmodulin Kinase II. At this point I'm 99% sure I'd respond to a treatment protocol geared towards IBD such as a TNF inhibitor or even some immunosuppressants.

I had a colonoscopy a few weeks ago which turned up surprisingly normal. I see maroon-colored blood regularly in my stool, and it's definitely not from hemorrhoids, as I've had those as well and the blood was much lighter. Even during the prep, there were small chunks of bloody tissue. The colonoscopy only shows a small length of the GI tract, so it didn't rule out the possibility of visible inflammation somewhere in the small intestine. Maybe a pill capsule would be helpful, but that would require another prep session, and that was hard on me. Even stranger, almost all my symptoms revolve around my GI tract, and it burns/cramps quite intensely there. Maybe the mucosa there is clear but the nerve fibers are severely damaged?

I was hoping I could try IVIG, but the rheumatologist I'm currently seeing didn't think it would be effective. There was a study on anakinra, another il-1 inhibitor, for ME/CFS, but its setup looked very poorly designed.

Here is a progression of my geographic tongue over the span of four days. GT is often said to be "painless", but for me, the lesions can sting quite badly and the level of pain in them is related to the pain in my intestine and neuropathy in the hands/feet.

 

[Gingergrrl]

Speckled, 1:160.

That was my exact result on ANA (1:160, speckled).

I was hoping I could try IVIG, but the rheumatologist I'm currently seeing didn't think it would be effective.

That's a bummer and I think IVIG would be worth trying in your case. I am really hoping these positive Sjogrens autoantibodies will lead to the treatments that you want and need.

 

[Dmitri]

That was my exact result on ANA (1:160, speckled).



That's a bummer and I think IVIG would be worth trying in your case. I am really hoping these positive Sjogrens autoantibodies will lead to the treatments that you want and need.

It's taking forever to get a neurology follow-up regarding the SFN, but it will finally happen next month. There are multiple studies showing the success of IVIG in treating SFN, so hopefully it will be considered. But SFN alone probably won't be enough to get it covered by insurance.

https://www.ncbi.nlm.nih.gov/pubmed/29403541

"Apparently autoimmune", that's currently where I stand

 

[Gingergrrl]

There are multiple studies showing the success of IVIG in treating SFN, so hopefully it will be considered. But SFN alone probably won't be enough to get it covered by insurance.

There are also studies of IVIG being used in Bechets so maybe w/SFN, Sjogrens, and Bechets it would be enough for your insurance. Well, actually it depends if you have private insurance or Medicare/Medicaid or other weird combinations of insurance like I did.

"Apparently autoimmune", that's currently where I stand

 

[Diwi9]

@Dmitri - The one person I know with Behcets gets Remicade infusions and they work for her.

 

[Dmitri]

There are also studies of IVIG being used in Bechets so maybe w/SFN, Sjogrens, and Bechets it would be enough for your insurance. Well, actually it depends if you have private insurance or Medicare/Medicaid or other weird combinations of insurance like I did.

I think my insurance is just private, medicaid managed care through United Healthcare. There are five or so different MMC companies for choice here, and from what I remember, medicaid provides them with a monthly pay for each client. I was surprised this biologic was covered, which is more expensive than IVIG.

@Dmitri - The one person I know with Behcets gets Remicade infusions and they work for her.

I thought that this doctor would offer TNF-a inhibitors too after I fail the oral drugs, so the less known il-1 inhibitors he prescribed were a surprise. Prior to the rilonacept, he prescribed canakinumab, which wasn't approved by insurance despite being cheaper.

 

[Dmitri]

I had the biopsy taken two weeks ago and found out about the results yesterday. It was a partial positive and interpreted as mild sialadenitis, but not significant enough for a Sjogren's diagnosis based on this sample. The rheumatologist was about to order a second biopsy but then settled on this one being enough combined with the positive blood panel.

I also stopped taking the rilonacept since it didn't appear to do anything after two months. The doctor prescribed IVIG with the indication of small fiber neuropathy, counting on that eventually being approved and making a difference.

 

[used_to_race]

I had the biopsy taken two weeks ago and found out about the results yesterday. It was a partial positive and interpreted as mild sialadenitis, but not significant enough for a Sjogren's diagnosis based on this sample. The rheumatologist was about to order a second biopsy but then settled on this one being enough combined with the positive blood panel.

I also stopped taking the rilonacept since it didn't appear to do anything after two months. The doctor prescribed IVIG with the indication of small fiber neuropathy, counting on that eventually being approved and making a difference.

What sort of doctor ordered the biopsy that confirmed small fiber neuropathy?

 

[Dmitri]

What sort of doctor ordered the biopsy that confirmed small fiber neuropathy?

It was a neurologist, and the first good neurologist I saw after seeing about four others over the past few years. Sadly, as an MS specialist, there's not much further workup she can do. I need to find a decent neuromuscular specialist who takes my insurance. The rheumatologist was the one who prescribed IVIG for it, though.

 

[Gingergrrl]

It was a neurologist, and the first good neurologist I saw after seeing about four others over the past few years.

I was unable to find a neurologist (and saw three bad ones in 2016) and would ask who you found but you are on the wrong coast

I need to find a decent neuromuscular specialist

If you ever find one, please let me know

The rheumatologist was the one who prescribed IVIG for it, though.

This is great news and keep us posted with the IVIG.