I have ET Jak2+ at 8% platelets 415 diagnosed 2020 and have been taking Hydrea plus aspirin daily. Recently due to side effects of Hydrea my consultant said I could come off the Hydrea for 3 months to see how I felt and then consider retaking it or other options. So have been off Hydrea for 3 weeks now and feel so much better but wake up with a terrible headache but gets better during the day. Wondered if this is normal for coming off Hydrea? I am 71 year old fit female living in the UK.
Thanks all for all your posts.
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Fairbank
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hi Fairbank, sorry to hear that you are having side effects and also the bad headache when you wake up, not very nice for you. Give your haematology nurse a call and ask her/him for advice about the headaches as to whether they are linked to you coming off the Hydroxycarbamide. Best wishes, Maz
Hi Fairbank. So when I first got diagnosed with ET in 2008, it was because I had been having bad headaches every day for months. I went to my GP and they took some blood tests and my platelets were around 600. He sent me to a hematologist and he diagnosed me with ET jak 2 and put me on a HU and my headaches went away. It wasn’t until recently that my headaches started coming back when I wake up in the morning. But then they go away after I start walking around. So I guess the point to my story is that maybe going off hydroxyurea may be a cause for your headaches. Like Maz said, you need to talk to your doctor about this.Good luck to you.
Yes mine do get better when I get up! Like you when I was on Hydrea my headaches were better but still had the occasional one or two.Thank you and wishing you well.
The headaches could actually be Et related. A possible microvascular issue. Definitely talk to your MPN Care team about this issue. It might resolve with low-dose aspirin 2x/day, but do not try this without talking to your doc. It also may be an indication that you should move to another med sooner rather than later.
Hi hunter 5582,I'm trialling your advice re the aspirin twice a day. So far I am crossing fingers that I can eliminate the propranol and/or topomax regimen, whose side effects have proven a problem. I'm taking 100mg aspirin am and pm. Currently I'm just on a 100mg dose at night (and have been on this dose for about 7 years). If this works after a week, I'll check with my specialist if it's OK to continue.
I've researched some more on waking (aka hypnic) headaches and I believe it's highly likely that they are linked to ET. I always thought they were unrelated. Thanks for your timely suggestion.
I have been off Hydrea for eleven weeks now due to side effects, most notably peripheral neuropathy. The medication is still in your system and it can take three to four months to flush out the chemo according to my GP. So it is entirely possible you will still have to deal with some issues for a while yet. I am still not right even after all this time. I hope things get better for you soon.
Hi I've been taking Hydroxy and asprin for 7 years now due to ET and Jak2 diagnoses. I often get headaches some bad some slight, it was headaches that took me to the GP originally. I think headaches are a symptom of the disease and when your blood and platelet levels fluctuate they can definitely affect the way you feel. For me though the single most important thing, I look at it as a third medicine, is to keep well hydrated. It's a pain but it does work. Good luck
Hi Fairbank,Sorry to hear about your headaches. They sound like hypnic (aka 'waking' ) headaches, which I've had for a few years now. I don't know if they are/were related to my once higher platelet count (I have ET), but they have not subsided with meds. I have them about 3-4 times each week. They mostly pass within an hour of getting up and don't require meds for relief.
I saw a haematologist who put me on propranolol, but it's not much help. I also had these headaches before my platelet count came down and before my bone marrow biopsy.
Best to get diagnosed first and work on one of the many meds available...surely there's one out there that can really make life better and not have nasty side effects. Nothing worse than being woken up with a headache. Interesting that only 1% of people have these hypnic headaches and they strike women over 60 mainly.
By the way, I'm currently on Hydroxy 500mg/day and platelets are normal.
Hi thanks for the information on Hypnic headaches which is very interesting. I’ve had a lot of waking headaches over the years and one of the treatments I use which always works for me is paracetamol + caffeine. I looked up these type of headaches and it said to have a cup of coffee before bedtime!!
Thanks for that tip, Fairbank. Is that caffeine + paracetamol in tablet form and do you take it as a preventative or when the headache hits in the early hours of the morning?I haven't tried drinking a cup of strong coffee before bedtime, but would give it a trial.
I sometimes take a Anadin extra I.e paracetamol + aspirin + caffeine at bedtime and that works but if I awake with a bad headache in the middle of the night it’s the only thing that gets rid of it. Ibuprofen just doesn’t work at all. Drinking coffee before bed would keep me awake but may try it!!
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