I have been on Hydoxurrea on and off for a year now and quit taking it about a month ago .

[Strumin210]

I started the medication back for 3 days and started getting cramps,massive cramps so I quit it again. My platelets are around 900,000 at the moment. I have a oncology appointment Thursday morning to discuss this. I can't take interferon so what could I ask the Doctor?

[hunter5582]

I believe that you were previously diagnosed with early PMF with thrombocytosis. If you have a MF diagnosis, then Jakafi is a treatment option. If your diagnosis is still ET, then Jakafi would be off-label but still an option. It would be a challenge to get insurance approval.

Another option for ET is anagrelide. Anagrelide is considered a second-line option due to its side effect profile. Still, some people tolerate it better than HU.

You can also ask about whether there are any clinical trials that you are eligible for. There are some promising options in development.

[Strumin210 in reply to hunter5582]

Thanks my friend. I will see what they say Thursday as I know I need to have better numbers than my platelets constantly running 700,000 and a million.

[Codybear1499]

I hope everything works out for you

[lizzziep]

When I developed a reaction to hydroxy after 3 years on it for ET I was changed to Anagrelide which I took without major problems for several years, it controlled my platelets well. At first I had some palpitations but they faded and I just used to get some now and again, nothing too bad.

[Strumin210 in reply to lizzziep]

Thanks for the reply. I will see what they suggest tomorrow.

[mpnunlocked in reply to Strumin210]

I also stopped Hydroxy due to side effects and am now on Anagrelide with no problems. I am 75 with ET CALR mutation.Have never had clots. And, take no blood thinners. My platelets average above normal, 500s to 700s, but not a problem for me.. yet.