Headaches on HU

[Mirror368]

I was diagnosed with ET/JAK2 June 2022. I was put on HU 500 mg daily. I started with headaches after two weeks. If headache was bad then I felt light headed and had a first ever vertigo episode. Hematologist took me off HU for a month while I went through MRI and balance/dizziness/vertigo test…tests were negative.

I was put back on 500 mg HU every other day. After two weeks headaches started. So far platelets are around 500-600 taking every other day and I can tolerate them. I do drink 64 ozs of fluids daily, I am afraid of trying Anagrelide as I have Paroxysmal AFib (take Eliquis).

My question is did anyone experience this and then headaches eventually stop?

Eileen in Pennsylvania, USA

[hunter5582]

Headaches are a common side effect with HU. The may or may not resolve. I had different side effects while on HU. they did not resolve until I discontinued the HU. We are all different in how we respond to these meds. None of us can predict for you if the adverse effects will diminish in your case. It is true that adverse effects tend to be dose dependant. Perhaps a lower dose would help.

There are other options to treat ET than HU and anagrelide. Pegasys is considered the other first-line treatment option. Note that anagrelide is considered to be a second-line treatment option. Some of us do much better on Pegasys than HU. In my case, Pegasys was more effective and easier to tolerate than HU. Note, however, that we are all different in how we respond.

Suggest you contact a MPN Specialist to review your options. These options could also include drugs in clinical trial like Besremi and bomedemstat.

All the best.

[Mardihel]

Hi it is a daunting time, I have been taking Hydroxy for 4 yrs now, must admit I hate putting it in my mouth everyday but needs must. I've reduced my platelets to v around 469 and am happy with that, and do not have headache s very rare in n fact. I did suffer with them before Et jak2 diagnosed, Just drink plenty of water, I find that helps greatly, at least 8 large glasses. I do hope the headache s stop good luck.

[Swim360]

Hi Eileen,

I am on 500mg HU dose every day and also suffered mild continuous headaches for the first few weeks. Fortunately, these have now stopped probably lasted for approx. 2-3months.

I feel ok now

[Mirror368 in reply to Swim360]

Thanks, very encouraging.

[Oscarsboy]

I get bouts of them periodically and am on HU. I have just gone through a session of two to three weeks having headaches, then they subside again. I have been on HU about the same time as you, but am never sure whether it is the ET Jak2 or the HU. I did have far worse headaches prior to starting treatment and still get various symptoms. I have a telephone review tomorrow so am about to raise the question yet again.

[Wyebird]

maybe a combination of both would be suitable. Good luck

[PMac314]

Hi Eileen

Sde effect are a complicated topic. I have been on hydroxy urea for 4 years (500 mg twice a day). This has kept my platelet count around 400 - 450 with no headaches. However, I have been much more tired than before I started on HU. So, my doctor suggested we try anagrelide. I have been on it for a week. As I said this is complicated, so here is my full story. Maybe some of this will help.

I wanted to find a way around the fatigue, and had been discussing this with my doctor for several months. One thing I tried (before the anagrelide) was acupuncture, on the theory that it might provide some detoxification. This really seemed to help. My acupuntrurist also suggested some diet changes based on Chinese medicine includinmg more red meat. this also seemed to help. Feeling much better.

So, then I wanted to feel even better, so I switched to anagrelide. Initial dose was 0.5 mg twice a day. First day was fine. Second day some diarrhea hit. Third day more diarrhea, and a headache. Took some diarrhea medicine, and that fixed that problem, but then gas/bloating hit. Still with the headache. And I just felt sick.

I have previously had a fib, so I was initially worried about the reported instances of this side effect, but that has NOT been a problem.

Bottom line, I am getting off the anagrelide and going back to hydroxy urea. I also am going to make my acupuncturist a regular part of my medical team. These various medication lower the platelets, but they are cleary toxic. I think the acupuncture might be a way to get the benefit of these meds while minimizing the side effects.

Good Luck

Peter

[Mirror368 in reply to PMac314]

Hi Peter,

Thank you for sharing your experiences. My hematologist, due to constant headaches, has allowed me to go off Hydroxyurea for a month as last labs were great, platelets at 528, and I am on a blood thinner for AFib. We are out of our home area for a couple months selling and closing a house. We will return in a few weeks so I will see hematologist again soon.

I will look into a consult with MPN specialist, possibility of low dose Pegasys. I am afraid of Anagrelide as it seems to cause so many to have palpitations, dizziness, headaches.

Thank you for the acupuncture recommendation…I will look into it.

Good luck returning back to Hydroxyurea.

Eileen