changed from hydroxyurea to anargalide

[mustabshra]

Hi everyone,

My platelets were not getting reduced with hydroxyurea, so today dr put me on anargalide. Interferon is not available in my country (Malaysia) so I do have only two options. Any insight on ur experience with anargalide?. Thanks

[mpnunlocked]

I am 74 years old (diagnosed with ET, CALR 2 mutation about 3 years ago), and I had bad side effects from hydroxyurea. It took about a year and a half for them to show up. Therefore, the doctor recommended Anagrelide which I have been on for about 4 months - so far no major problems. I have done a lot of research on ET and the drugs used to treat it. Since it is a rare disease...there is not a lot of knowledge or consistency among doctors who are not MPN specialists about the correct treatment. And, depending on you age, general health, and the mutation you have - the decision could be different.

From what I have read, Hydroxy is not recommended for young people becasue of its toxicity. In some cases just low dose aspirin is prescribed with frequent blood tests. In others interferon is preferred for younger patients.

The web site for the Cleveland Clinic has the best information about MPNs...do your own research so you can ask informed questions.

[Ratton]

Have been on Anagrelide for 3 yrs- no problems ! Hope you will succeed with them.

[Sivasi]

Everybody reacts differently, but like you Hydroxy stopped being effective ( after 6 years) and I went on Anagrelide. It didn't suit me at all - very swollen and stiff feet and ankles, which subsided as soon as I came off it. I'm now on Peg Interferon without any bad side effects so far. Best of luck.

[veryoldman]

80+, ET, CALR, USA. Had a hard-to-heal ankle ulcer while taking HU...switched to anagrelide. Turned out to be a bad move. Somehow, anagrelide attacked my lungs and did some serious damage before I realized it. Now on supplemental O2 around the clock, and experience serious shortness of breath climbing stairs or almost any exercise. Back on HU and now using inhalers on a regular basis. About a year into the problem, the tests, scans, and many, many doctor visits have failed to pinpoint the problem. I'm looking for a second opinion in the near future, and if that turns up an answer, I'll post it. I pass this along sans any medical training, but, if I were you, I would see my doc ASAP at the first sign of shortness of breath. I wish you well.

[JustKeepSw1mming in reply to veryoldman]

Hi Veryoldman,

Very sorry to hear!!

I am on HU (have been for about 4 months now). I haven't been on anagrelide, but I also have big issues with the shortness of breath with a slightest effort. Multiple tests (heart and lungs), but it is still not clear what the cause is. Good luck with your next checks and I hope the doctors figure out the cause to adress it.

I have my hematologist appointment and will be asking him for an alternative to HU. I have already tried interferon, that I couldn't tolerate.

I expect that anagrelide will be the next option, but I am worried now.

[ciye in reply to JustKeepSw1mming]

Breathlessness is a major side effect of hydroxy it's on the patient leaflet yet dismissed by so many doc's. So frustrating.

[JustKeepSw1mming in reply to ciye]

I agree, Ciye, it is very disheartening. Especially, when the tests don't show any reason behind it, but one can't move 5 meters, because it is so bad.

[Little-friend-Susan]

I took anagralide for a while because HU wasn’t bringing the platelets down but it took everything down too far so I went back on HU. It works fine now.

[Windy51]

hi I was on Hydrea and now changed to Anagrelide it has been pretty good it gives me a bit of pulp attention but goes away after a couple of hours I take two a day I have been taking for six months so far so good they don’t put weight on they are reducing my platelets and a little bit of hair loss but pretty good so far good luck with you taking them 🌻

[JustKeepSw1mming]

Hi Mustabshra,

I was on 1000mg of Hydrea a day. In a month, my platelets went down from 900 to 300. However, I had major issues with my breathing. The dose was reduced to 500, but the platelets went up to 700 in 1 month.

I hope that your doctor finds the best option for you. But I second the advice already given below. Contact them asap if you have any issues.

All the best,

Mary

[Wyebird]

hi I tried that. Few people can tolerate anagrelide. It worked for me until I exceeded 9 tablets a week. I ended up on a combination of hydroxi and anagrelide and stayed on that for about 4 yrs.

good luck