Anagralide versus Hydroxy.

[Garden987]

I have spoken to my haemo. Nurse because of so many side effects. I have ET and she mentioned changing to anagralide instead of Hydroxy.and is going to talk to my haemo. about this. My platelets are now 320 and I have looked up the possible side effects of Anagralide which seem to be similar to Hydroxy. I wonder if anyone has changed to Anagralide and what effect it had. Nurse also suggested taking asprin only but I wanted to be able to discuss it with my haemo. When

My haemo. Nurse has suggested switching from Hydroxy. To Anagralide but I want to be able to ask haemotologist any relevant questions regarding switching. Have any of you changed to Anagralide and if so what benefits (or not) did you find. Advice please MPN family. Thanks. Mary

[Helen1952]

I have sent you a PM Mary xx

[Norman45]

After 18 months and feeling really off-colour on Hydroxy I switched to Anagrelide. It is far more toxic but I was able to tolerate it much better. After four years I was diagnosed with Post ET MF and am now on Ruxolitinib which gives me far more up days than down days.

You’ve nothing to lose from trying Anagrelide and seeing how it goes.

Hope this helps.

[Garden987 in reply to Norman45]

Anagralide v Hydrox. Hi Norman. Thank you for your reply. Am still unsure about going on to Anagralide as the side effects can be pretty strong. Rutulixib. Is not an option at my hospital. Glad you have found something that helps you. It seems any meds.don't like me so not much choice. Am seeing haemo. Next week and depending on my BT results we are going to look at possibly reducing strength of Hydroxy. Or just taking asprin.it's all a bit of a mystery isn't it. Thanks again and stay well. MAryy.

[AndyT]

How about asking to try Pegasys instead of HU? I’ve been on Pegasys for over 2 years and it controls my counts really well with minimal side effects - I now just inject every 3 weeks.

I know Pegasys isn’t available everywhere but it’s worth asking the question.

[Garden987]

Hi Andy. Thanks for replying. I have been told by my haemo.dept. that Anagralide is the only other choice. I live in Wales and I am under the impression the Welsh Government won't fund any other alternative but I will ask. Glad Pegasus is helping you. All good wishes. Mary

[Belgobrit72]

I started on anagrelide when first diagnosed. Terrible headache the first couple of days then fine. Took it for 8 months or so, it never really made a big difference to my platelet counts, very slight reduction then started giving me palpitations so I had to stop. As count wasn't too high I was put on aspirin only for 18 months or so but last year my count started going up dramatically. Was put on hydroxy then and much better result on platelet control, although my haematocrit is not. Doesn't seem to be an ideal solution to the problem. Good luck

[Hidden]

Hi Mary I changed two years ago from Hydroxy to Anagrelide and it was for the best decision. I don't have a straight forward MPN - originally I was diagnosed with ET, 6 months later this was changed to RARS-T which is a crossover MPN & MDS. On Hydroxy I was having to have 2 units of blood every two to three weeks and this played havoc with my iron levels. On Anegrelide I have not now had a transfusion for over a year and my iron is starting to settle down. I don't feel I have any side effects from the Anagrelide but have to take more tablets (5 a day). I was unsure about rhe change but for me it has certainly improved my life from when I was ib Hydroxy. Hope this is helpful but we all react differently to these medications. Carol x

[lizzziep]

Hi Mary, I was on hydroxy for over 3 years for ET, then started to have side effects (ulcers on my feet), so was changed to Anagrelide. I was told Anagrelide is more platelet orientated than hydroxy, also more expensive, which is why hydroxy is always prescribed first! I had quite a lot of palpitations at first but they faded after 2 or 3 weeks, I still get them a bit, usually a couple of hours after taking it. I am on 4 a day, 2 in the morning and 2 in the evening. My platelets have been a lot better while on Anagrelide and are usually in "normal" numbers - 379 on my last check.

Best wishes, Lizzie

[Hmmm79]

I've never been on hydroxy but have been on anagrelide for nearly ten years; got up to eight tablets a day... no side effects I'm aware of.