JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches

Welcome @ontheverge

I am 79 and was diagnosed last year with ET JAK2 by labs and bone marrow biopsy. At diagnosis my platelets were 735. I started taking 500 mg daily HU (Hydroxyurea). I take a blood thinner for AFib so I do not take aspirin. Within two weeks I had daily headaches, feeling light headed and a first ever vertigo attack. I was taken HU for a month and then back on it every other day…very few headaches. I was thrilled when I had a platelet count of 434…my goal is to have platelets 450 or below.

I went through a very stressful period moving….many headaches and palpitations, Hematologist let me stop taking for a couple months, My platelets are 528 and I just started HU 500 mg but only on Monday/Wednesday/Friday…no headaches. Next lab is 6 weeks later. Hoping I can continue this.

I am now taking it with breakfast. You need to take with a full glass of water. I wet my lips and swirl water in my mouth, swallow the capsule, and follow up with rest of the water…helps prevent mouth sores. You need minimum 64 ounces of fluid daily to help rid the toxic effect of HU. I do not even touch the capsule. I tip it out to a different cap and tilt it into my mouth.

Good luck with your journey, Eileen

I know everyone is different and has different reactions to various meds/foods/ etc. My experience has been positive with Hydrea, although I know it has toxicity. My platelets were 1,250,000 when I was first diagnosed. The hematologist I had at the time ( in Venezuela) put me on 5 caps a day for a few days, then as my platelet count lowered, he lowered the dosage to4, 3, and now I have been on two a day for 8 years. I did experience heartburn almost immediately, for which he put me on an acid blocker, which I still take. i have had few side effects, but no headaches. My feet sometimes get blisters, and I've been to the dermatologist and asked my oncologist. It does seem to be like the hand foot problem some other cancer patients have with varied chemo. My brother in law also experienced problems with his feet being tender, sore skin peeling off, etc. But it has gotten better, I have learned that if you have a steroid injection for anything like arthritis, etc., or take steroids in a tablet for ling problems, which I also have, it elevates your platelets even more. The oncologist tells me that they give steroids to patients that have the opposite of what we have, which is Thrombocytopenia, low platelet count, i order to elevate their count so they won't have hemorraging problems.
Not sure if the headaches you are experiencing might go away in time, but wanted to write and tell you I have had a positive experience so far with Hydrea.
Now, my new doctor is wanting to change me to Anagrelide. I have heard from some that they have not had good experiences with it. It is also way more expensive. But the good part is that it only targets the platelets and not the white and red cells. So I am in the middle of a decision and unless I can find it cheaper and try it, I will stay on the Hydrea and keep and eye on the red and white cells. There is a lot to learn about all this and I am always looking for information about the disease/disorder or whatever they want to call it. But I am thankful they do have something to treat it with, or I probably would have had a stroke. I had a blood clot behind the knee when I was first diagnosed, very painful, and experienced a bad, sharp headache behind my left eye, which is what sent me to the doctors in the first place to find out what I had. I never have headaches, so that one was alarming. My blood pressure was high at the time, and I had always had low or good blood pressure.
I will add that I do have some swelling in the legs and feet that might be side effects, but also have other conditions that might explain this, and sores in the mouth on occasion. They will come every two or three weeks and I treat them with a mouthwash of equal parts of peroxide and water, and eventually they go away. The lack of energy I feel could be form this or several things combined. I will be 73 in a couple months and have been battling this since I was diagnosed at almost 65.
So, we continue on our journey, and I hope your headaches go away of they find another treatment that works better for you.
EsperanzaM

I know everyone is different and has different reactions to various meds/foods/ etc. My experience has been positive with Hydrea, although I know it has toxicity. My platelets were 1,250,000 when I was first diagnosed. The hematologist I had at the time ( in Venezuela) put me on 5 caps a day for a few days, then as my platelet count lowered, he lowered the dosage to4, 3, and now I have been on two a day for 8 years. I did experience heartburn almost immediately, for which he put me on an acid blocker, which I still take. i have had few side effects, but no headaches. My feet sometimes get blisters, and I've been to the dermatologist and asked my oncologist. It does seem to be like the hand foot problem some other cancer patients have with varied chemo. My brother in law also experienced problems with his feet being tender, sore skin peeling off, etc. But it has gotten better, I have learned that if you have a steroid injection for anything like arthritis, etc., or take steroids in a tablet for ling problems, which I also have, it elevates your platelets even more. The oncologist tells me that they give steroids to patients that have the opposite of what we have, which is Thrombocytopenia, low platelet count, i order to elevate their count so they won't have hemorraging problems.
Not sure if the headaches you are experiencing might go away in time, but wanted to write and tell you I have had a positive experience so far with Hydrea.
Now, my new doctor is wanting to change me to Anagrelide. I have heard from some that they have not had good experiences with it. It is also way more expensive. But the good part is that it only targets the platelets and not the white and red cells. So I am in the middle of a decision and unless I can find it cheaper and try it, I will stay on the Hydrea and keep and eye on the red and white cells. There is a lot to learn about all this and I am always looking for information about the disease/disorder or whatever they want to call it. But I am thankful they do have something to treat it with, or I probably would have had a stroke. I had a blood clot behind the knee when I was first diagnosed, very painful, and experienced a bad, sharp headache behind my left eye, which is what sent me to the doctors in the first place to find out what I had. I never have headaches, so that one was alarming. My blood pressure was high at the time, and I had always had low or good blood pressure.
I will add that I do have some swelling in the legs and feet that might be side effects, but also have other conditions that might explain this, and sores in the mouth on occasion. They will come every two or three weeks and I treat them with a mouthwash of equal parts of peroxide and water, and eventually they go away. The lack of energy I feel could be form this or several things combined. I will be 73 in a couple months and have been battling this since I was diagnosed at almost 65.
So, we continue on our journey, and I hope your headaches go away of they find another treatment that works better for you.
EsperanzaM

just wondering, I am on HU (3 years now) but I also take an 81mg aspirin to keep platelets from sticking......are you also on aspirin? Why does your dr want to change you to Anagrelide if the HU is working....

My hematologist suggested Anagrelide in place of HU if headaches continue. I would not want to go that way as headaches are a common side effect and some have palpitations. I have AFib so afraid of palpitation side effect.

Look on Goodrx.com. I came up with a low price of $48 for 60 pills.

Eileen