JAK2 Mutation - Effects and Questions

Im recently diagnosed with acquired von Willebrand and Jak2, my platelets are around 600. I was put on 500mg Hydroxera then 3 weeks later 1000 mg of Hydroxera in APRIL 2019 and by May 5 I had flu like symptoms, fever 101.3, body ache etc. I stopped taking it for about 10 days was put back on and in 48 hours the symptoms were back. So Im one of those rare people who is allergic to Hydroxy. Interestingly my platelets fell to 163 with a 1,000mg dose. Is it possible that I was over medicated and that caused the reaction? It is clearly the best option as Allegraride may cause ventricular arrhythmia and Interferon makes people feel like they have the flu. My hematologist is not as concerned about bleeding as the blood clots that may result from the Jak2 mutation. My echo was great and Im otherwise healthy active and fit. Of interest to me in these discussions it is possible to have ET/Jak2 and not express disease. Is that true for Acquired Von Willebands/Jak2?

Seems to me that the normal platelet range is between 200 and 400 so if your platelet count fell to 163 your Hydroxyurea treatment plan may be overly aggressive. Time to have a discussion with your Hemotologist or Oncologist. Good luck.

Hi Barbie 75....I also have jak2 and take 500mg Hyderabad six days a week. I still have extreme fatigue so I just take the time to put my feet up and rest my body or get right into bed. This seems to work. Mornings are the best part of my day but by noon I feel weak. Good luck

Even though you take hydrea six days, do you still
have symptoms of PV? If so, what are your symptoms and how do you handle them?

Is anyone in this group from Maine???

I am tired some in the morning but otherwise once I get going I’m ok. I wonder if it is your BP meds making you tired? How’s your diet? Do you take any supplements?

Hi Barbie......I have jak2.....myeloproliferative neoplasm, I believe it is similar to pv. Chronic fatigue most of the time, poor balance and occasional nausea. When I feel weak I try to rest often and for at least two hours at a time. I usually go to bed by 6 o'clock just to relax and watch tv

My JAK2 Mutation was discovered 11 years ago, quite by accident. I never had any symptoms. (My hematologist told me that for many, the only symptom is death, by a blood split in the brain, heart, or lung!). My original platelet count was close to a million! I’ve been taking Hydrea daily ever since, with no side effects from the drug. However, over the last couple years, my count has fluctuated between 450 to 800. My dosage is adjusted and rechecked again in 4-6 weeks. It’s possible the Hydrea might be losing its effectiveness. I worry that another drug cost or copay might be astronomical! If only a cure could be found. I’m 76 now, and other than arthritis, am in very good health.

After reading that so many JAK2 people experience being weak or tired, and have balance issues, now I wonder if I can attribute my similar symptoms to the disorder. I tell people that my balance issue can be described as having been on a cheap drunk without having the pleasure. And I now tire easily. So now I’ll discuss this with my hematologist next week.

We may be on to something. I have blamed it on my COPD, however I don't need daytime oxygen. But I sound like both of you and go to bed by 6:00, just to rest. It is nice to know that it could be not in our head. I hate being lazy. lol