I was on HU for many years and had it stop working. Switched to Anagrelide but having nasty side effects. Just wondering if anyone has had HU stop working and gone back on it after six months or a year break and had it be effective again. I asked my doctor but he didn’t know if that was a possibility.
Wishing all of you the best.
Doglover
Hi I was hydrocarbamide and was taken off due to side affects and it was lowering my white blood cells. I had a break than we tried it again on a lower dose. Unfortunately it did the same as before even when it was a really low dose. I switched to anagrelide at it's working well and no side affects.
It’s interesting to read how different therapies affect different people. When I first started treatment for ET my doctor had me on hydroxy and anagrelide. At the time, I had difficulty obtaining anagrelide and I was forced to stop taking it for a few weeks. When the pharmacy finally got it, I was unable to tolerate it so I had to get off it. For many years I only took hydroxy and baby aspirin When I transitioned to PV, my doctor added Jakafi. It seems like every medication we try, our bodies have to adjust to them. It is not an easy process. I hope you continue to do well on anegrelide.
Regards,
Cindy
Thank you Cindy. I was on hydroxyurea for 12 years and it suddenly stopped lowering my platelet count but the rest of my counts were diving too low. No side effects but anemia. I seem to have most of the side effects possible from Anagrelide and feel miserable all the time. I was hoping to be able to go back to HU in time but doesn’t seem to work that way. For some reason my doctors will not prescribe Pegasus - says he hates it, and Jakafi has not been approved for ET in Canada so would cost me about $15,000 per month. I keep hoping for a new drug to come out but haven’t heard of anything else in the works. We all react so differently to drugs.
I’m really sorry you’re doing so poorly on Anagrelide. I know exactly how you feel. My hematologist has been very good at adjusting my medications over the years. It’s interesting how different countries have different accesses and opinions in regards to medications. My insurance company is charged $12,000 a month for my Jakafi, But I only pay $10 a month. I’d never heard of Pegasus until I got on this site. If it’s the same as interferon, my doctor told me it’s too drastic for me. I really hope you can get a second opinion and get your meds readjusted.
Hi I’m on 23 hydroxy a week but it wasn’t enough so in addition I was put on 7 anagrelide a week. Still not enough. The anagrelide was increased to 14 a week. I had awful side affects. I couldn’t drive. So I dropped back down to 7 until my next appointment. Now I’m on 10 anagrilide a week and23 hydroxy a week. I’m coping fine. After 3 years -Success at last! Maybe a combination is something that would suit you.
My hematologist told me Anagrelide was my last option but side effects are horrid. I’m currently taking 14 a week. Was on 21 but it was unbearable. My hematologist would not refer me to an MPN specialist so my family doctor has agreed to refer me. I was hoping the HU might work if I tried again but your experience makes that seem very unlikely. Thanks for replying.
Glad to hear that you’ve been referred to an MPN Specialist. With their expertise they will know the best way forward for you. You’ll be up and running again in no time!
Isn’t it odd that your haematologist says he ‘hates Pegasys? That’s a strong statement.
Mary x
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