Essential Thrombocythemia & Sjogrens or any Auto Immune Disease

Posted by darginskylisa @darginskylisa, Feb 1 3:39am

I developed Sjogrens's a couple of years after being diagnosed with Essential Thrombocythemia. Anyone else experience the same?

Go fight, my warrior friends

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eloise999 | @eloise999 | Feb 1 8:31am

Yes, although I think the Sjogrens may have come first? I was diagnosed with ET in March 2025. I was diagnosed with. Sjogren’s later. However, I have had symptoms of both for 10 years or maybe more. I have heard of people with MPNs developing Sjogren’s from interferon, but I have only been treated with hydroxyurea.

nohrt4me (Jean) | @nohrt4me | Feb 1 8:33am

Lots of people here have reported dry eyes, dry mouth, and other Sjogren's symptoms, tho not clear that's what they have. Did yr doc say that ET brought on the Sjogren's? Any treatment?

MPN specialists at one of those "ask the expert" things I sometimes dial into note that people with ET are prone to gout. They also note that untreated ET can lead to vonWillebrand's syndrome, clots, and strokes. And people report gastric upsets and circulatory issues due to the effects of ET or HU.

I swear my allergies and rosacea are worse due to age plus the increased histamines due to ET, but docs just increase the meds for that and tell me it's all unrelated.

Some patients, of course, have no symptoms, even after many years, and feel great. This might have something to do with allele burden, diet, weight, co-morbidities, driver mutation, etc. Nobody knows for sure. PV and MF are more serious (life-threatening) MPNs, and they get more attention from researchers.

But v-e-r-y slowly, clinicians are starting to realize that ET is not asymptomatic for everyone, and that quality of life can be affected to some degree for many of us.

Okay, off my soapbox now!

darginskylisa | @darginskylisa | Feb 1 1:54pm

In reply to @nohrt4me "Lots of people here have reported dry eyes, dry mouth, and other Sjogren's symptoms, tho not..." + (show)

@nohrt4me I am treated such Hydrochloroquine (sp? same stuff used for malaria)

eloise999 | @eloise999 | Feb 2 8:05am

In reply to @nohrt4me "Lots of people here have reported dry eyes, dry mouth, and other Sjogren's symptoms, tho not..." + (show)

@nohrt4me I do not have the Sjogren’s biomarker. My rheumatologist says 30-40% of people with symptoms do not have it and that it is not a good test. Maybe that is why my diagnosis is Sjogren’s symdrome?? Anyway, I have symptoms and take pilocarpine. It helps a lot. I even breathe better now making me think my sinuses were dry. Also eye issues, gerd and dental issues. I can live with all of this stuff fortunately. It took me awhile to seek out specialists beyond my hematologist to help me treat the disease. I take hydroxyurea for cytoreduction. It works well for me. Side effects are not bad.

eloise999 | @eloise999 | Feb 3 9:00am

In reply to @darginskylisa "@nohrt4me I am treated such Hydrochloroquine (sp? same stuff used for malaria)" + (show)

@darginskylisa so your doctor is treating your Sjogrens with hydroquinone? Your ET is untreated?

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