Anagralide

[GrannyG1]

I’ve just bee diagnosed with ET and about to start Anagralide. Does anyone have any advice or information from when they started taking it?

[Ratton]

Hello GrannyG1

I have been taking Anagrelide for 3 plus years- I do have an itchy skin (don't know whether its anything to do with tabs) have asked consultant Haematologist she didn't think so)

Otherwise fine with them.

[rcan_sMF]

Hi. If you have any heart complications be sure to check with your primary doc or cardiologist. There are known, possible side effects implicated for certain such complications. Not all are affected and/or the risk may outweigh the benefit. Best to ask lots of questions / and there’s info online as well. Good luck.

[lizzziep]

I’ve been on it for a few years. At first I had quite a few palpitations but they settled down and I rarely get them now. It controls platelets well. I’m on two capsules a day, one in the morning and one at night. Hope that helps you. 😊

[ainslie]

Maz posted the MPN voice leaflet on Anagrelide a few days ago when someone else asked about Anagrelide, or you can see it on the MPN voice website, it’s worth a read

[Otterfield]

My advice would be not to get despondent and give up if you get headaches for the first couple of weeks. I did but they soon stopped. Occasional palpitations continued but they never lasted long. If I was able to lie down, that helped.

[gset]

I have been on anagrelide for 6 years and once over the initial settling in I am free of side effects and symptoms. I space mine out during the day equally as I take three. My consultant advised once before going to bed and I work back from that.

Avoid caffeine around the times you are taking it as that can help start a few palpitations . I still drink some tea and coffee but never coffee at similar times to when I take it. Otherwise I try to follow a Mediterranean style diet which helps energy and I don’t have the problems I had on Hydroxyurea/ hydroxycarbamide and interferon. It has controlled my platelets well too. I wish I had been on it instead of the others.

There also will be things they tell you to watch out in the information leaflet - I read that when I start and then forget about it as most times not everyone gets those side effects. However I keep a copy in the fridge so I know where to look to check should suddenly I have an odd symptom and May need help as I go to get medical advice from GP. Remember we can still get other illnesses so not everything is caused by our MPN or treatment too,so GPs are helpful there. Best of luck x

[ts75]

hi! Just to give a different perspective on coffeee. After the first 1-2 weeks my palpitations disaapeared and now I’m fine w taking my morning pill while also having coffee. No side effects whatsoever now… Live a normal life style I’d say with normal eating and excersize… good luck!

[GK40]

You may get some heart palpations to start with but these will pass.This has been the best medication for me and I take 2 tabs morning and night

[Mishie14]

Late last year Anagrelide was my second ET drug after Hydroxyurea that caused horrible side effects and deteriorated quality of life. I thought Anagrelide was going to work as at a low does of 1 mg twice per day it was slowly helping me to recover from the Hydroxyurea and slowly address high platelets. It was doing mostly OK until after a month hematology increased the dose to 2 mg twice per day. A nearly immediate reaction was heart palpitations and fast beating. I wore a heart monitor for 3 days. I had a silent heart attack a year previously and was not about to risk that again. It was all very scary. Hematology cut the dose to 3 mg per day--1 mg morning, noon, and night. Made no difference, the cardio side effects continued. Anagrelide was out for me. From December through February I had no ET drug and saw liver specialist to help get those enzymes down from Hydroxyurea. In March of this year I started peginterferon which has worked well so far.

We are all different and as you can see from comments the MPN drugs work well for some and not for others. Thankfully there are options. It may take a bit to settle on what is best for you. I encourage you to speak up and don't take anything for granted. Nobody cares more about you than you do! This Granny says stay safe, GrannyG1.