Greetings fellow ET sufferers. I was started on hydroxycarbamide 500mg about a month ago...no problems on that dose. About 2 weeks ago the specialist increased the dose to 1000mg Mon-Thurs and 500mg Fri-Sun. That's when the headaches started and I'm having one each day. I get very little relief from iboprufen or aspirin and even my migraine meds have no effect. My neck muscles feel very tight and sore much of the time. My platelet count is coming down slowly (in the upper range of 500,000 now), but the specialist wants a 400,000 reading on the blood test. He expects this count in about 8-10 weeks. I'm having fortnightly blood tests and visits to the specialist.
My question to those with similar headache problems is
1. How long will these continue?
2. Were you offered a special analgesic that was effective?
Hi Junegal,52,My Hydroxycarbamide was increased back in December from 500g Monday to Thursday and 1,000g Friday to Sunday and yes Since increase started I have suffered headaches which cause my neck, jaw, and back of head and back of my eyes really ache, also my mouth has become very sore as well, all I can take is paracetamol which does help every four hours. Cannot use Ibuprofen or any of the gels. I have bloods next week, and Telephone conversation with Haematologist and going to mention as not had such bad headaches like this before and I have been on it since 2013, so know how you feel.
Thanks for your support, Jean. Strange that the headaches have only just cropped up? All the best. I will be seeing my specialist in a few days....hopefully some relief tips.
Junegal, hydroxycarbamide lowers magnesium needed for many functions including making thiamine and vitamin D bioactive. Soaking in a warm tub with Epsom salts for 20 minutes is relaxing and provides magnesium. Lipothiamine is a ttfd form of thiamine that can pass through the blood/brain barrier better than some other forms of thiamine. Check it out. Alway consult with a health care professional before using any supplement.
Many thanks Pte82 for your suggestions and links. I will bring the vitamin supplements you mentioned to the specialists attention next visit. Soaking in a epsom salt bath sound very relaxing. All the best.Anna
It's a gimmick because people don't put enough in the tub. Use a pound with a tablespoon of baking soda. You don't have to be immerged. If you don't have a tub use a container large enough to put your feet in and use a smaller amount of the Epsom salts and baking soda. Takes about 15 to 20 min.
Hi Hidden - My Hydroxycarbamide was also increased to 1000mg 4 x a week and 500mg x 3 times two weeks ago, and I am also experiencing the exact same issues... whole neck pain (it spreads down to my shoulders )and headaches. The increased dose coincided with having my first AstraZeneca vaccine, so I wasn't sure whether that had also played a part in it, but as a few of us are experiencing the same, perhaps it is due to the increase in Hydroxy.
Unfortunately I can't use the advice from Pte82 as I don't have a bath here (just a shower) but I'm now really missing a nice long relaxing soak in the bath.
My next haem appointment isn't until April, so I'll keep an eye open for what yours says.
HiIt's very important to keep well hydrated when taking hydroxy. I found I had headaches but resolved most of them by ensuring that I drank at least 2 litres of water every day.
I am the same ET Jak 2 positive. I get headaches but was told not to take Ibruprofen if on aspirin. No anti inflammatory drugs. I take paracetamol but find drinking lots of water is best. The Hydroxy tends to dehydrate me and dehydration causes headaches. Hope you get the level of platelets down soontake care.
Compared to me you are on a low dose of hydroxi but for you it’s obviously interfering with your quality of life.It maybe that dropping 1 tablet a week could help.
I it did in my case. I was on 10 anagrelide and 16 hydroxi a week. The heamo was thrilled with my bloods ‘ so why do I feel so spaced out’ the answer was drop
One anagrelide and raise hydroxi by one. - immediately I felt better.
My nurse said it seems that your body had reached its level of toxicity tolerance.
Maybe tweaking your meds is the answer. Not everyone can tolerate anagrelide but worth asking about.
Sorry to hear you are having trouble tolerating the increased dose of HU. While some people tolerate HU, not all of us can. For some reducing the dose will reduce the adverse effects. For others, myself included, adverse effects will continue even at a low dose. The good news is that there are other options if it turns out that you really are HU-intolerant. It is very important that you let your hematologist know that you are experiencing adverse effects and that they are not tolerable. Working assertively and collaboratively with your treatment team will result in a more optimal treatment plan going forward.
I saw the note about avoiding NSAIDs due to potentiation of blood thinning meds (e.g. aspirin). That is very important. Acetaminophen (paracetamol) is the only OTC analgesic I know of that is safe to take. While no specific interaction between HU and acetaminophen shows up, both medications have the potential for hepatotoxicity. Please be sure to talk to you physician about this potential if you use acetaminophen on a regular basis.
Sending a huge thankyou to all member who contributed to my post re headaches. I will share what the specialist recommends. I didn't know about the iboprufen + aspirin combination, so I will cease with that practice.Cheers for now.
I support the comments already made by other members about hydration. Have you tried increasing your water intake and has that brought any relief?
Another question that occurs to me is whether your Hydroxycarbamide dose was increased too quickly - a big jump rather than gradual small increases? I started on this medication just over a year ago at 7 capsules a week, since increased to 8, then 9. My platelets have recently come down to within the normal range.
Good luck with your next haematology consultation!
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Headaches/joint pains worsening? 
ET and Left sided headache.
Did HU reduce your headaches? 
