Greetings everyone. Just by way of introduction I'm almost 69 and was first "unofficially diagnosed with ET in 2010. At the time the physician mentioned I might need a lumbar puncture when the platelet count reached 1,000,000. He suggested I take a 100mg aspirin daily. My platelet count has remained relatively stable between approx 540,000 -640,000 since 2010. A few months ago the platelets increased and my GP referrred me to a haemo. I also have the JAK2 mutation. The lumbar puncture and subsequent biopsy confirmed the ET diagnosis and I was given the hydroxycarbamide, stating at 500mg per day. about 2 weeks ago the dose was increased and I started getting terrible headaches. Thankfully there have been no further symptoms to date. I was terrified at the thought of losing my locks, being nauseous etc. It's really frightening when the haemo explains all the possible side effects!
So pleased to have found a group that I can relate to and share notes with.
Welcome to the forum. Glad you decided to join us.
Sorry to hear about the side effects from the HU. Headaches are unfortunately on of the common side effects. These may decline if you reduce the dose. Do know that some of us, myself included, are HU-intolerant. The good news is that there are other options when you need cytoreduction and HU is not going to work for you.
Thanks Hunter. I was so surprised to stumble on the website and so pleased that I did. I'll come back frequently....still learning the ropes of the site, but so far it looks user-friendly.Cheers,
Welcome. I don’t think your dose will interfere with hair loss but I must admit accepting it is one of my most difficult challenges. Regarding headaches I’ve just written a reply to someone else regarding them. Maybe the increase is too much for you too soon. Could you discuss with your heamo a slightly lower dose. Just a reduction of one tablet a week might do it. Albeit it will take longer to get your platelets down to a normal level.
Hello Junegal, I also would like to welcome you to this group. You will find us very friendly and it certainly helps to talk things over with fellow MPN sufferers. I am also ET Jak2+, diagnosed 3 years ago and am on 500Hydroxy and Clopidogrel. I wonder if the increase in your dose of HU has caused the headaches. Hope you get it sorted. Kind regards.
hello Junegal52 and welcome to our forum. I am so sorry to hear that you are suffering with terrible headaches since your Hydroxycarbamide was increased, I hope that you get this sorted out soon, ask you haematologist about suitable pain relief and also discuss with him the fact that your headaches started after the increase in dose.
Hi and Welcome, I am pretty new, just starting to comment to people. This is the first site I've run across and that was by accident! I am 61, diagnosed July 2019.
I had 4 strokes and MIA, since 2010.
Wish I'd found out what was wrong b4 the 2-4!! Big 1st one would have been enough! I have been on Hydrea since dia, on levels from 1k daily to now 500 4 days, one day off, etc. When on 1k, my hair was falling out, along with other weird symptoms, although Dr said he didn't think from med, grrr. Ironically, I have the worst headaches now, since I dropped to 4/1, and it's everyday by 4-5. I was thinking of asking for pain meds too, as this is not a functional way to live. Don't think with my current Dr's, and the way they about pain meds, I will get. The Hydrea works so differently for each of us, but I do believe I am intolerant to it.
I also get really bad ulcerated sores in and down throat about every 6-7 weeks.
Hope it gets better for you soon, but I would ask for meds to get some relief. Good luck, wishing you the best.
Thanks for your welcome Paige. I am seeing my haemo today and hope he will reduce the dose back to the 500 /day or we try something else. I had no problems on that dose. This last 2 weeks was hell. Now it's 24/7 headaches and nausea. The anti-nausea tablets he prescribed are not helping.
I had an elevated platelet count (500-600) and a suspected diagnosis for about 10 years, but the Bone marrow in January confirmed it, so just 4 weeks on the Hydra. I'm so sorry you are having a bad time of it. Take care.
Welcome Junegal52!! I have PV, JAK 2, and ET and took the Hydra for a few months but had some side effects also. I did lose some hair in small patches but after getting off Hydra, it did grow back, Not everyone loses hair so hopefully you won't if your dosage is reduced. I hope the headaches and nausea go away but Hydra does make your platelets go down. Good luck and hope you get to feel better!!
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