I would like some advise please: Hello, I have... - MPN Voice

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I would like some advise please

wendycu profile image
11 Replies

Hello,

I have been to see my doctor today. He wants me to think about changing my medication from Hydroxyurea to Anagrelide. He asked me to come on the group and search for information.

I've done the search, the side affects have scared me.

My doctor believes that Hydroxy is not helping me as I'm anaemic. I am very tired every day.

Please let me know how you are on Anagrelide.

Thank you/

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wendycu profile image
wendycu
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11 Replies
AndyT profile image
AndyT

Have you asked about Pegasys as an alternative? It works well for many of us and is often the next alternative if HU isn’t working.

wendycu profile image
wendycu in reply to AndyT

This is drug to help with E.T and M.F?

AndyT profile image
AndyT in reply to wendycu

Yes it is a form of interferon that is used to reduce blood cell counts for ET and MF. You can find information about it on the MPN Voice website. It isn’t available in all countries but worth checking if it is an option for you.

Hmmm79 profile image
Hmmm79

I've been on anagrelide for 11 years and don't think I've had any side effects. I'm on a high dose too x

StreetPastor profile image
StreetPastor in reply to Hmmm79

Do you have ET as I do? What dose are you on aa I'm six years in on Anagrelide?

wendycu profile image
wendycu in reply to StreetPastor

I had E.T 11 years I take 3 hydroxyurea tablets and 300 mg aspirin. Just been told I have M.F, very thing is fine now but I’m anemic. The doctor said if I go on Anagrelide, I would get anemia.

Hmmm79 profile image
Hmmm79 in reply to StreetPastor

Yes, PV and ET, just gone back up to 3mg a day as had been on a lower dose for a few months but before that was on 4mg/day.

Malaika profile image
Malaika

I took Anagrelide for a short while and it did not suit me at all. I ended up in bed and my GP said I should not take anymore. But remember we are all different. I am lucky enough to be taking Interferon and now have best counts I have ever had. Still have fatigue no idea if that is medication disease or age. Kindest regards Malaika

MCurlygirl profile image
MCurlygirl

I was originally on Anagrylide, and my doc ADDED Hydroxyurea. I've been exhausted most of the time anyway, and didn't really notice a difference there, but the combination is MUCH harder on my GI system than Anagrylide alone... I don't know if that's the Hydroxyurea or the combo.

StreetPastor profile image
StreetPastor

I've taken Anagrelide for six years as I was completely unable to cope with Hydroxy. My platelets respond well to it and I insist on a three yearly bone marrow biopsy to check how things are doing (recommended by the expert Dr Claire Harrison, via this site). It's been a rough ride for me but I appear to be a sensitive flower where medication is concerned. I get all over skeletal pain but you most probably wouldn't.

MichaelS profile image
MichaelS

Just make sure that your kidney function tests are done regularly. I was on hydroxy for 30 years, as I had PV, but platelets went up to over 830 and I was put on Analgrelide, but it raised my creatinine to 158, so I was taken off it very quickly. This was many years ago, but it was sufficient for an investigation by the renal doctors, and I am on a yearly watch with them now. My PV changed to MF about 9 years ago.

Best wishes to all from Michael

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