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Essential Thrombocythemia (ET) and viruses
Blood Cancers & Disorders | Last Active: Dec 13, 2023 | Replies (53)Comment receiving replies
I was diagnosed with JAK2 positive in 12/21. My platelets rose to high 700's and I was 59 so I was started on Hydroxyurea 9 months ago-first 500mg daily, the 500mg alternating with 1000mg and now on 1000 mg daily. My platelets are finally in the normal range but I have gotten sick at least 5 times since starting. I am a physician with four kids and 2 preschool aged grand children and NEVER got sick. One of the times I wound up in urgent care and then on steroids, antibiotics and an inhaler which has never happened in my life-even when I had COVID pre-vaccination. I don't have much to offer-but it is reassuring to me that I am not the only one experiencing this. My Hematologist keeps telling me HU is only "mildly immunosuppressive" but my body is telling me something else. I take Liposomal Vitamin C and zinc/daily, try to stay rested and am much more careful about being around sick people (ie preschool children) than I was before but it's frustrating. I'm so excited to find this discussion. It's hard to find information let alone people who understand what you're going through.
Replies to "I was diagnosed with JAK2 positive in 12/21. My platelets rose to high 700's and I..."
That's me. I am getting sick: Chills/sweating, nausea, headache, just plain feel awful, what seems to be about every few weeks. And seems like it is lasting longer and longer. Still feeling sick and it has been since Saturday night and its Thursday.
Hi shhanks. Welcome to the site.
After I had seven vaccines (2 Moderna, 1 booster, 2 Shingrix, flu, Tdap) in 2021 I developed psoriasis on my scalp and some on legs. First time I ever had a skin condition and I am 78. I believe they affected my immune system.
Then in 2022 I was diagnosed with ET JAK2. I was put on 500 mg HU every day…had daily headaches. I was taken off HU for a few weeks (I take a blood thinner so was protected). I restarted 500 mg HU but every other day. My platelets were down from high of 735 to 434 at last CBC. My CBC are monthly so I hope I am stable and can continue every other day.
I had Covid at the beginning of 2022 and one bad bronchitis…otherwise healthy.
This is a great website and Lori, our moderator, has great input.
Best wishes, Eileen
Hello there, I was diagnosed with ET in the summer of 2022. My platelet count was over 700 at that time. My hematologist/oncologist put me on 500 HU and a baby aspirin per day. This brought my platelets down to 500. My oncologist then put me on 1000 MG’s of HU and one baby aspirin per day and this brought it down to 420. My husband and I caught Covid. After five days my husband tested negative and did not feel that bad. It took me two weeks to test negative with Covid, and I felt much worse than he did. I am very tired each day and have some dizziness. I did take the Covid vaccine and booster prior to developing ET. I am now reading and looking at some studies on the Covid vaccine. These studies are showing that the vaccine will cause platelets to change. There are many articles about Covid vaccine and platelets if you Google it. Can anyone relate to this Connection between Covid vaccine and change in your platelets. This is so very upsetting.
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yes, my hemo didn't think my bone pain in shin and toes was from ET Jak2, but ????.I agree, Also breathlessness, but not cardio or pulmon.....and why did it just start?
I think we are in high risk group with supressed immunity. I don't think they know everything. ps....also nice support group on Facebook