Commencing anagrelide

[Dianne-Guisborough]

Hi

I was diagnosed with polycythemia jak2 + in November 2016 and up until now have been treated with warfarin , clopidergrol and weekly venesections .

Today my haematologist has commenced me on anagrelide 500mcgs twice per day as my platelets are between 850,000 and 1.03 million most of the time.

For me , because of a history of melanoma my haematologist has said hydroxyurea is contraindicated as is interferon as I had an unprovoked PE last year ( she thinks the PE was probs due to undiagnosed PV which was diagnosed as many are, following a routine blood test) .

I sound a walking disaster area but honestly I'm not - I'm very positive, very active but a bit of a complicated history as a lot of us are on the forum - I'm just a control freak and like to know all the bits and pieces about any new treatment I start .

Any advice regarding taking anagrelide would be really greatly appreciated.

Thank you for taking the time to read this and best wishes to all on the forum

Love Dianne xxxx

[lizzziep]

I was changed onto Anagrelide from Hydroxy a few months ago. At first I got a lot of palpitations but they faded. I just get them now and again now. Usually about 2 hours after I have taken the Anagrelide. I am on 4 capsules per day. 2 in a morning and 2 at night. Otherwise I've been ok on it - so far!! My platelets went up at first, but the dose was increased and now they are in "normal" levels. I have ET by the way.

Best wishes

Lizzie x

[Dianne-Guisborough in reply to lizzziep]

Hi Lizzie

I've been on anagrelide 3 weeks now and my platelets have gone up . I noticed that yours went up initially too - i was just wondering how long was it before your platelets started to lower ? I was on 1 capsule on a morning and one on an evening . Today my Haematologist has increased them to 2 on a morning and 1 on an evening .

So far I've been lucky and no really problematic side effects

Thanks for any advice

Kind regards

Dianne

[lizzziep in reply to Dianne-Guisborough]

I went back after 3 weeks the first time, and was increased to 1 in a morning and 2 at night, from 1 twice a day. They still hadn't come down much so they were Then increased to 2 twice a day which I am still on. I go back Wednesday after 6 weeks. I also take aspirin. I'm hoping my platelets have come down a bit more and will be in normal levels.

Lizzie x

[Dianne-Guisborough]

Thanks for your reply Lizzie.

Fingers crossed your levels have lowered when you go back to see your Haematologist.

Take care and look after yourself

Dianne xx