Anyone with Essential Thrombocythemia & Sjogrens or autoimmune?

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.

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!

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

@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.

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

It's been a while since the last post, but since I just picked up my prescription for hydroxyurea today I thought I might chime in. I was diagnosed with Sjögren's syndrome (SS) thirty years ago. Developed Non Hodgkin's lymphoma (NHL) in 2007 and received chemo followed by Rituxan maintenance therapy. NHL is in remission. Since then I have developed hypogammaglobulinemia, I don't develop antibodies and if exposed to infections, it's likely I'll get the infection and frequently it progresses to pneumonia. Also, there are people where immunizations don't work...and I'm one of them. In the winter I wear a mask when I go inside buildings other than my home. Last week I was diagnosed with essential thrombocythemia.
Despite the amount of autoimmunity here, I no longer see a rheumatologist, but see an oncologist who is also a hematologist and an immunologist. Needless to say, I have bad blood, but a usually cheerful disposition. I'm thankful that the foods not recommended for those with essential thrombocythemia are also foods I avoid because of SS. Interestingly, my father had both SS and NHL. I'm curious about what side effects other have experienced and if there are natural remedies for them. I don't want either, but prefer pain to nausea. Thanks for reading.

@nellellen

You're a warrior for sure, nellellen.

Everyone reacts differently to HU. In hopes of encouraging you, I'll say that despite my high (7,500 mg/week) dose, the only side effects I have are dry skin and some constipation.

Dry skin is addressed by having bottles of lotion everywhere. Stash Band-Aids around too, because little cuts bleed with great melodrama.

For constipation, I drink lots of water (this helpful guidance is from nohrt4me), and choose fiber-rich foods whenever possible.

For me, it's an excellent trade-off, because HU's protecting my bone marrow and freeing me from the exhaustion and headaches of ET.

I hope your experience with HU will be equally positive.

@nellellen hello. I was diagnosed with ET last year. I take HU daily and a baby asprin. I am triple negative. Last fall I was diagnosed with Sjögren’s Syndrome. I am taking pilocarpine for dry mouth but it also helps with other dry membranes. I use restasis for my eyes. Doing ok on all these treatments so far. Side effects of treatments are manageable. I think I had both diseases for awhile before I was diagnosed, but the symptoms of Sjogrens got worse as my platelets increased. I kind of wonder if my Sjogrens is a side effect of ET or it is just a coincidence that I have both. I do not have the biomarkers for Sjogrens. I have heard of some patients who develop Sjogrens after taking an interferon, but not other folks who had Sjogrens way before their MPN diagnosis.

@eloise999
I too have Sjogrens and ET. Take HU and baby aspirin daily but am constantly changing HU dose as platelets constantly go up and down. Now taking 9 doses a week. Have Sjogrens for about 8 years and ET for 2 years. The Sjogrens accelerated when I got ET. Take xylitol tablets at night and xlidra for my eyes daily. I am 86 and have a lot of fatigue but count my steps daily and do utube
Senior exercises of tai chi and balance exercises as often as I can. I feel better when I get some exercise. The diseases slow me down but I am happy as I do not have extreme pain. I am grateful for that.

Mee too! So grateful I am not feeling a lot of pain. I do have stiffness and some skeletal-muscular issues, but the exercise helps. Thanks for sharing your experience.