Essential Thrombocythemia (ET) and viruses

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.

Yes, I believe that the same thing happened to me. My high platelets were discovered in July of 2022. My primary doctor tested me every 3 months. Platelets kept increasing from 500's to 600's. That's when I was sent to a Hematologist/Oncologist and diagnosed with ET in Dec. 2022. The weird thing is that my Dermatologist said that she has noticed an increase in the number of her patients who have blood disorders and weird rashes.

I think there is a correlation from the vaccine and ET, but how can we prove it? The vaccine supposedly is some type of gene therapy.

Hello,

I have some questions about having high platelets. My levels increased from 500's to 600's, from 2022 to 2023. I would like to know if Vitamin C will help decrease the platelet since I've also read that it could contribute to increasing the platelet range. Also, in having 600s platelets, is it recommended to visit a hematologist as soon as possible since I've been told to wait 4 months to see if the platelets decrease with taking a baby aspirin per day?
Thank you.

Hi,

Good luck with that.
Please cosider Hydrea drug 2-3 tablets daily, 500mg. Possibly 3 daily if it gets worst and keep seeing pathology for blood tests to keep checking your levels.
Get your doctor to organise this, please, before it rises any further. Surprised the Doctor
has not moved in this direction.

All the best.
From Qld, Australia.

Teech64,
I cannot imagine starting on 2-3 Hydroxy a day, I had daily headaches taking I am now taking 500 mg every other day and headaches are less. Hope to be able to continue that dosage. I am also on a blood thinner for AFib.
Of course, everyone is different but I feel your body needs to adjust to Hydroxy. Eileen

Hi,

I have already done that. I stopped taking them. I am going back to pathology to test my blood levels soon.
Yes, everyone is different.
All the best.

My experience is: I am 72. In 2015 I was diagnosed with ET and came back to USA (from Venezuela, where we were missionaries) for a bone marrow biopsy which confirmed JAK 2 ET. Initially my platelets were 1,250,000. They iitially started me on 5 - 500 mg Hydrea a day, decreasing dosage every week or so after frequent weekly blood work. Currently I am on 1,000 mg daily of Hydroxyurea (Hydrea) and two days a week I take 1,500 mg (three capsules. They check me about every two months with labs at oncology and of course am followed closely by oncologist. In 2015 I had a blood clot behind my R knee under the valve. A year or so of blood thinners did the job. I have not had any blood clots since and am not taking anymore blood thinners at present except for a baby aspirin daily. I also have Bonchiectasis, scarring on lungs from repeated pneumonia years ago, and have had asthma since childhood. I had COVID with few symptoms in 2020, did not take any vaccines, since I felt I had enough clotting issues to deal with, and I have not had any more problems at all. I try to stay in healthy environments, do not use masks unless it is mandatory in some places, and I eat healthy. I take maintenance meds for my lungs, drink lots of fluids (the Hydrea has always caused some heartburn, so I make sure I take it with plenty of water) and try to keep as normal a life as possible. I have had decreased energy but take protein drinks also. Had hip replacement surgery in the last 4 years, back surgery in 2021, all with caution and release from cardiologist, pulmonologist, oncology, etc. since I do present some risks, But I have done well. I have learned that STEROIDS (injections for my back in the years before my hip and back surgeries) and my pulmonary infections, increases platelet production. So, I avoid but when I must have them to get well, they have to increase my Hydrea dosage to allow for that. Just had not heard it mentioned and I did not realize it till recently. Last year, after being well controlled for over 6 years, my platelets went up to 900,000 + hence adding the extra 1,500 mg weekly and now 1,000 mg weekly (1 extra capsule 2 days a week).
Good to have this forum to learn more about what we and others have experienced.

Depends on your age and other risk factors. Vit C and D didn't change my platelets. I would keep taking aspirin and getting re-tested. My Hemo said counts can change from morning to afternoon to evening, they don't really know....but high platelets can result in clots, strokes, heart attacks .....so word to wise,,,,,I've been on HU with baby aspirin for a few years now

Hi Victoria. My heart skipped a beat when I read your post, specifically about the "bone pain in shin". In 2022, joint pain went into overdrive. But in past 2 months, both shin bones are very painful even at night when trying to sleep. I haven't done anything different so no explanation there. I've told my Internist a few times. She ordered bone density = normal. I have severe iron deficiency anemia and get infusions every 3 months or so (unknown cause). I also have shortness of breath, but that's usually from IDA when my iron has crashed. The bone pain is worrisome! I'm used to joint pain with osteoarthritis but never bones. I need to Google your condition to see if it connects with some of my other symptoms. Ty for sharing. I would love to know more!

During a 5th spine surgery at age 79, I was diagnosed with Jak2 mutation. My platelet count mid 700s. Have gone through all five oral chemos available for thrombocytosis over 4 year period. Side effects were extensive with all from nausea, headache, constipation, weakness, fatigue, weight-gain (10% increase), dizziness, extreme skin dryness, extreme skin cancers and itching beyond belief. I decided to give the ol' body some chemical relief and literally stopped taking anything for a period of 4 mos. Finally experienced feeling great again. Physician recommended trying low dose of Jakafi 10mg twice a day. Results have been wbc, rbc and platelet count(441) returned to normal ranges last six months, with minimal side effects, i.e.- very dry skin, maintain weight gain of 10% even with excellent healthy low caloric diet.