Essential Thrombocythemia: Looking for information and support

If you are concerned about COVID booster, call your pharmacist. These guys have a handle on drug interactions and contraindications. I have had boosters regularly. I usually feel crappy for 3-5 days after the shot so I am only getting it once a year now. I get yearly flu.

Just before she retired, my PCP said she would ask elderly patients if they wanted a COVID booster, but she was no longer actively pushing it because a) the virus is less likely to cause fatalities now and b) she was tired of hearing patients argue with her by repeating misinformation they heard. "They act like I'm trying to kill them." Sad to lose her. Hope the new one is as good.

I got a reply from the hematologist yesterday. Ok to boost. The protection outweighs the risk of effects on the blood count by hu. ( I am trying to reduce the risk for long Covid and other future unknowns. )

Looking for a support group for newly diagnosed Essential Thrombocythemia due JAK2 genetic mutation. This is all new to me

Looking for a support group for newly diagnosed Essential Thrombocythemia due JAK2 genetic mutation. This is all new to me

Looking for a support group for newly diagnosed Essential Thrombocythemia due JAK2 genetic mutation. This is all new to me

@gama1287

As Colleen says, it's a STEEP learning curve.

Dip into the discussion here at your own pace.

Just ask and we will all try to help!

Thanks, I’ve been on HU for one month now, main side effect is fatigue and perhaps constipation , is this a common side effect?

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@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.

Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!