Anagrelide: Having had ET for the past 11 years... - MPN Voice

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Anagrelide

Milburn
Milburn

Having had ET for the past 11 years very successfully treated with HU I recently developed a leg ulcer that was due to the extended use of HU. Taken off HU and treatment stopped for a period of 6 weeks to allow ulcer to heal. However in that time platelets went up to 990,000. Ulcer not completely healed. Was put onto Anagrelide now some 4 weeks ago. Platelets still climbing now at 1220,000. Does Anagrelide always work?

4 Replies
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Hi, I Took anagrelide when I was first diagnosed (ET triple neg) I took it for about 5 months (suffered awful side effects) with little reduction in platelets. Then was put onto HYdroxy 1000 daily (also with side effect but more tolerable - nausea etc.!), which did reduce my platelet to normal levels. However, recently tried to reduce my dose to 500 daily, which resulted in my platelets going back up to over 1000.

Anyway, so anagrelide did not work for me.

The same thing happened to me, I had two serious leg ulcers suddenly following 10 years of HU. They took 6months to heal, three months after stopping HU they were gone. . I was put on peg inteferon which didn’t work and my platelets climbed to 1.3 million rising all the time as the HU came out of my system. Then due to problems I had with the inteferon and it not working I was moved onto anagrelide, which reduced my platelets back down to 550k. So it worked for me but inteferon did not. The withdrawal from HU which stays in your system a while after you stop caused my platelets to increase and so they had to work on adapting the dosage, all taking time. It appears we are all very individual with these conditions and need to work with our haematologist to find the best doses for us, as well as being patient on transitioning from one drug to another. Good luck, stay positive and talk to your haematologist.

I was changed to Anagrelide after getting ulcers on my fee, after 3 years on hydroxy. At first I had a lot of palpitations. I've been on it a couple of years now, and I sometimes get palpitations about 2 hours after taking it, nothing too bad though. It has brought my platelets down to normal levels, it took a few months though for them to start descending. They were 370 a couple of weeks ago.

Hope all goes well for you.

Lizzie

I am on both. I started with hydroxy but it was affecting my haemoglobin level and I was switched to Anagrelide. That caused my platelets to rise.Eventually I was put on a combination of both - 2000 Anag a day plus 500 hydroxy for 4 days and 1000 for 3. My platelets are now under 400 and the terrible breathlessness has stopped. I am watching my legs carefully though as I have a lot of thread veins

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