Hi @toykyolin, you’re currently taking hydroxyurea and low dose aspirin for your ET. It looks like the treatment’s been helping to drop your platelet level. But the encouragement of that is being overshadowed by unpleasant symptoms you’re having.

Unfortunately as we age, our bodies don’t filter meds through as quickly as they used to and medication levels tend to stay elevated longer. It’s not uncommon for this harboring of medication in the body to have us experience heightened symptoms of potential overdose. I went through that myself. You start feeling toxic.

You may not be able to stop taking Hydroxy but you may be able to make an adjustment to the amount. Some other members who are/were on daily doses of Hydroxy have also had side effects and were able to decrease their meds to every other day instead of daily. For most it seems like this reduction was helpful. I know @eileen11108 takes 500mg every other day now and her headaches from the Hydroxy are gone. The medication is still working for her at the reduced level. She wrote about her experience in this discussion. Here’s the post: https://connect.mayoclinic.org/comment/778218/

A couple of other conversations you might find helpful. Not sure if you’ve seen them or not:
How do you manage side effects of Hydroxyurea?
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~~
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
You could ask your hematologist/oncologist what they think about trying that for a few weeks. If you have routine blood work anyway it would show whether the Hydroxy is still working to decrease your platelets or not at the reduced intake. It’s worth asking!

Dear Tokyolin: I am “flynnconn” and you can check out my specifics in 2 previous posts on this site. Maybe very similar to yours. Or close enough. I have taken hydroxyurea 500 mg daily for about six months. My highest platelet count was 611 before starting HU. And by using HU it came down to 250. But my hair was falling out, I was very short of breath in doing the simplest of things, and experienced extreme fatigue, so tired and weak, to the point I would doze off while watching a movie with friends. I am 83 years old and before this in very good health. Even now, before taking HU, had no symptoms When I complained to the hematologist I couldn’t tolerate this situation any more, he not only told me no , he said I should continue as instructed and see him again in 3 months . That prospect seemed outlandish to me. I was so miserable I told him I couldn’t possibly go on like this. The discussion then took on a kind of Turkish bazaar feel. He then said well then once every other day, but I did not agree. Then he offered 3 times a week. After this disturbing exchange, I agreed but immediately began looking for another Dr for a second opinion. Or at least a second approach. After all. It’s my life that’s in play here. And in meantime I lowered my dosage to twice a week, wanting to see what would happen to the platelet count with this lower dose. I almost immediately felt 100% better. After a month, bloodwork at my annual physical with my regular GP showed, yes, platelets had risen (to about 480) but a number I had been living with for years before going to a hematologist . After GP visit I lowered my intake to once a week. A month later my platelets had dropped to 450.And the terrible side effects had not returned. Soon I am going to see the new Dr at a well known clinic in NYC who specializes in myelofibrosis and the elderly. (After a bone marrow biopsy in January my diagnosis had progressed to prefibrotic myelofibrosis.) So I may have another decision to make in the future regarding medicines, to take or no, and how much. t. I only know for sure that my dr wasn’t happy with my refusal to continue with HU. But yet he was then willing to negotiate a lower dose on my insistence. Could it be that some doctors, maybe because of the rarity of some disorders, and especially those with mutations, just don’t know enough. Or don’t like to be questioned. I guess my bottom line so far is it’s your decision whether to endure a medication —maybe even a doctor—that doesn’t seem to be working right for you. If you are miserable, as I was, there could be other ways to treat you. That’s what I’m hoping for.