I have a weird question that I forgot to ask on my first visit to a MPN specialist 4 months ago. If ET can cause bleeding and PV cause clotting- would these two issues kind of function in a yin/yang sort of way?
Diagnosed with ET five years ago and PV in Aug. 2024, I have not taken any medication other than aspirin and began phlebotomy to reduce RBC 2 months ago. I have had afib since 2018 and an autoimmune condition since 2013.
My allele burden began at 19% and now is 28%. The specialist said I was not a likely candidate for Besremi & other INF meds due to the autoimmune condition. Interestingly, my only symptoms are ringing ears and the abnormal labs. Fatigue has been a factor years do to autoimmune. My platelets are at 850k & hematocrit of 44 since phlebotomy. Im concerned about disease progression. Anyone with autoimmune know of meds to address disease progression that are options?
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I have been diagnosed with nonspecific connective tissue disease. However, I have tested positive for Lupus & tested negative for it as well. My last check was negative. It appears I can impact my labs based on food & yoga. I take 200 mg of Plaquenel a day. I see my rheumatologist every 6 months so I would say it’s controlled.
I work full time & don’t miss days due to autoimmune, only sick maybe twice a year.
I would consult your rheumatologist about alpha interferon. I have MS on top of PV. My MPN specialist didn’t want to start it, I had to convince him to let me try. And my neurologist gave me the go ahead to try it told me he could rescue me with steroids. Luckily I didn’t need that. But MS is different. However, if you are well controlled and everyone is on board you maybe able to try it.
You are asking a somewhat complicated question. Erythrocytosis increases risk of thrombosis due to the increased viscosity of the blood and alteration in how the blood cells behave. Thrombocytosis increases the risk of both thrombosis and hemorrhage. It is not either or or yin/yang. It is both at the same time. This has to do with how the blood cells behave. Generally speaking, there is not a linear increase in risk of thrombosis with higher platelet numbers but there is a linear increase in risk of hemorrhage.
Having an autoimmune disorder not an absolute contraindication for consideration for one of the interferons but is an indication for significant caution. It would depend on a number of factors that you would need to review with a MPN Specialist. I would suggest consideration of Jakafi in this situation. Recent evidence suggests some of the same benefits regarding a reduction in JAK2 VAF. This is something else to discuss with a MPN Specialist.
Hi May I ask what auto immune condition? I have Sjogrens and ET Jak 2 also positive to Anti phospholipid syndrome .which all seems to complicate the situation L
I have been diagnosed with nonspecific connective tissue disease. However, I have tested positive for Lupus & tested negative for it as well. My last check was negative. It appears I can impact my labs based on food & yoga. I take 200 mg of Plaquenel a day. I see my rheumatologist every 6 months so I would say it’s controlled.
I work full time & don’t miss days due to autoimmune, only sick maybe twice a year.
Lupus is a B-cell mediated autoimmune disease, as is its close relative Sjogren's, which I have via a one-of-a-kind IFN event. Sero status can vary over time, but if there has been a positive result at any point it raises the odds for the Dx. If your Dx is unclear, have you been checked for Sjogren's? "nonspecific connective tissue disease" is one flag for it. It can present without dryness.
MS can actually be treated with IFN (the beta rather than alpha type is the specific indication) But B-cell mediated A-I is a known risk with IFN alpha (the one we take) in particular. Your current A-I seems to be mild. The odds are higher it stays that way if you opt out of IFN-α treatment.
This is from the severe black box warning in the Bes label:
"Risk of Serious Disorders: Interferon alfa products may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders."
We've seen near all of these on the forum, rare but real. Unfortunately many MPN Drs are not keen on A-I issues, I learned the hard way. You can also discuss with your Rheum.
As Hunter suggests, Rux does not have a specific A-I risk and may be a good option to discuss. I and others have experienced allele burden reductions with Rux, this good effect is now known to be common with Rux.
As an aside, it's an accident of history we don't take the beta version of IFN, (Plegridy) I've posted on a report discussing its potential. Plegridy has no A-I black box in its label.
Thank you so much for the information! It certainly makes sense & I wasn’t aware of the “alpha” - “beta” connection on autoimmune & INF meds. I’ll plan on asking the specialist about Rux in March
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ET and Autoimmune disease
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Update and few questions because i have no reliable sources 
Considering Besremi
