Anyone taking Anagrelide w/ ET+CALR?

[Zeppelin11]

I've been taking Hydrea since 2017 and have become tolerant to it. My platelets are in the millions so we are giving Pegasys another try but I'm dealing with some unpleasant side effects (already) and it's only been two weeks (dizziness, headaches, brain fog, fatigue, shortness of breath, irritability). I'm hoping to join a trial a November, but need an alternative right now. I have read that Anagrelide as been a good fit for some of you. Would love some insight as I feel like I'm running out of options....

[Orangeboykitty]

I have PV, not ET but due to phlebotomy my platelets rose into the millions. I used Anagrelide quite successfully. At the beginning of treatment it made my heart beat faster, but only for a short time during the day, and then that side effect went away. I had to switch to Jakafi after my spleen enlarged.

[lizzziep]

I’ve been on Anagrelide for quite a few years, a few heart palpitations at first but that settled down. It controlled the platelets. However it may have contributed to the fibrosis in my bone marrow, I now have MF. I’ve started on low dose interferon but still on 1 x Anagrelide per day to help with platelet control.

[HappyGirl25 in reply to lizzziep]

How could you tell it may have contributed to your fibrosis? And if so, then why are you still taking it?

[lizzziep in reply to HappyGirl25]

Consultant told me!

[HappyGirl25 in reply to lizzziep]

Did he tell you why he thinks so? I am on it and i am worried sick

[lizzziep in reply to HappyGirl25]

Apparently in some patients it can contribute to fibrosis but you should be monitored for that, however it is very good at controlling platelets. When I first went on it I got a few palpitations but they faded. Unfortunately all drugs have side effects. I’m waiting for one that makes me look younger and slimmer but there doesn’t seem to be one.

[Wyebird in reply to lizzziep]

I was told that anagrelide can cause fibrosis but once you stop taking it it will reverse. I do hope that becomes an option for you.

[gset]

I am post ET MF CALR positive and couldn’t take inteferon either with dreadful side effects and no impact on platelets. I have successfully on anagrelide for 6 years and no significant side effects, just avoid caffeine with it. I still have coffee just not around the times I take the drug. So I am very happy on it

[HappyGirl25 in reply to gset]

How long have you had ET before transforming to MF? And how long for the MF?

[gset in reply to HappyGirl25]

I have had ET for 16 years before transforming to MF but in early stages of that on Grade 1, 3 years with MF

[HappyGirl25 in reply to gset]

Wish you the best of health

[HappyGirl25 in reply to gset]

have you always been on medication since diagnosis? What meds? Your age at diagnosis? Sorry for the so many questions but I’m just new to this and I am also on Anagrelide and some say it leads to transformation to MF and I am so worried

[gset in reply to HappyGirl25]

10 years on Hydroxyurea, 6 months on Inteferon and 6 years on anagrelide, 3 before progression but I think I was progressing before it as showed fibrosis before starting it. Ask your team is the best way to find out as I haven’t heard that and I researched it a lot.

[Arty16]

I was on hydroxy for a couple of years but it was starting to affect my white and red blood cells.so switched to anagrelide a fee headaches in the beginning. My fatigue is better then hydroxy but still have my bad days. But it is deff better for me

[Ratton]

I have ET and my platelets are down to 309-am taking Anagrelide as could not tolerate Hydroxy-have been on Anag for over 3 yrs -feel fine.

[ETket]

I have CALR ET and also found the Hydroxycarbamide become less effective (my liver function apparently did not take to Interferon). For the last year I have been on a combination of Hydroxycarbamide and Anagrelide. I have found an increasing amount of side effects - heart palpitations, breathlessness, tiredness etc.

[HappyGirl25]

I have been on Anagrelide for 10 months now and it’s good. I had some side effects the first 2 maybe 3 weeks then they all subsided gradually. It brought my platelets to normal range while it didn’t affect other numbers as the doctor told me what’s good about it is that it only works on platelets.

Good luck to you!