Experiences with

Anagrelide

He has said previously that my medication (Anagrelide) is to blame for my problems. Previously I was on Hydroxy for a few years before developing horrendous foot ulcers which only healed when I was changed to Anagrelide, which I’ve been on for nearly 5 years.

Good and bad comments re Anagrelide would be appreciated. Many thanks.

Anagrelide and Busulfan don’t look attractive! PV dx2017, over 70 yrs so high risk. Any insights would be valuable. Thanks!

However today I saw my Haematologist who told me that for health reasons I could not have this medication and said the only option open to me is Anagrelide. I can't say I'm happy with this option and it's side effects. Can I have some feedback please from those that take it, Good and bad.

For the past 3.5 years my wife has been stable platelet wise with her counts at around 300 while on hydroxycarbamide every other day and Anagrelide 3 times a day, when things have gone awry it's been because of major bleeds or "experimentation" by her haematologist consultant.

My wife was diagnosed with ET in the early 90's and started on Hydrea then moved to Anagrelide. Then it progressed to MF and she was on Jakafi and then Inrebic which stopped because of very low platelets and hemoglobin.

I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues. However platelets at last phlebotomy were 1093 and have been that high for a while. RBC and WBC both high.

I'm 34 years old, diagnosed with ET in 2019 and recently been put on anagrelide 1.5mg/day to decrease platelets level. Its slowly but surely doing its job I was told by my specialist that anagrelide would be something smoother to start of on.

I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high.

Had some reservations re anagrelide. Anyway, about the same time I started atorvastatin. Then the peripheral neuropathy came with a bang! Of course I automatically assumed hydroxy was the culprit until I saw a post about atorvastatin and peripheral neuropathy.

Treated initially with hydroxycarbamide and then anagrelide . Really struggled with the side effects of these and I was offered interferon. At this point I just stopped going to the hospital.

His suggestion is to drop the HU for two weeks to see if the symptoms abate and research Anagrelide and Peg. My questions are Do symptoms get worse with time? Are the side effects of the other treaments any less annoying? Has this approach worked for anyone else?

Been on daily anagrelide and aspirin for ET jak2+ for 18 months. It's been slow progress but platelets are now sitting at 570 (from 850). Consultant wants them down to around 400 before he would consider me taking a break from immunosuppressants.

He would like to try another treatment called anagrelide but before I need to have my heart tested. Or he said I could try interferon. I asked about ruxolitinib but I was told that this drug is not licensed in the UK. My question is, has anyone had adverse symptoms with anagrelide or interferon?

I'm now dropping my 9 anagrelide and 3 of my 17 hydroxicarbmide a week. Last night I took another 90 units of interferon and paracetamol and went to bed waiting for the nausea to kick in. Nothing, no nausea no headache. No 5-2 diet!!!

He did tell me that he had a slight preference, for ease of administering and approval for Anagrelide, but that he would support my choice...

My wife has been on 3 anagrelide a day and 1 hydroxycarbamide every other day for quite a while now, they both work very well at keeping her platelets in the normal range.

This has been upped each time since I started on HU in December 2020 after 14 years on anagrelide whihc was suddenly stopped as consultant didnt like using anagrelide.

I was fine while taking anagrelide and found that hayfever tabs did the trick, this year am on HU (it's been 6 months now) and man am I suffering with hayfever, big time!!! Have anti histamine from dr that arent touching the sides!! Any ideas, advice or experiences greatly welcomed.

My wife has been on her current dosage of Anagrelide and hydroxycarbamide, for the past couple of years and her platelets have been quite settled at around 300. Her FBC showed 371 platelets six weeks ago, a few days later she had the AZ vaccine. Today her platelets were 153 and showing clumps.