Muscle weakness with Anagrelide?

[Ritazz]

Since early December, I have been experiencing increased fatigue, shortness of breath and painful muscle weakness in my thighs. I exercise daily but have trouble standing after sitting for even short periods of time due to the weakness. I do have creaky joints, but this feels/is muscular. Last January, my MPN specialist increased the Anagrelide dosage I was taking from .5 to 1mg 2xdaily, as platelets were 1200. After my last blood draw, he decreased the dosage back to .5 mg , as my HGB, HCT and RBC all indicated anemia.

I saw my PC and she attributed my symptoms to the higher dosage of Anagrelide. I see the MPN specialist next week and want to be armed with any information from the group, as I often feel like my migraines, shortness of breath, etc. are minimized due to my age (I’m a 73 yo female). Anyone else experience the muscle weakness due to Anagrelide?

[gset]

I am 61 and have been on anagrelide for almost 8 years and haven’t experienced muscle weakness, but we are all different. Is there anything else that has changed? Before you see your specialist try and work out how best to explain to them the change in your muscles and what it affects you doing in your daily life . I do get cramps but helps if I have a banana now and again. Hope your consultant can advise you.

[George1976]

CALR ET here. Anagrelide was the first med I tried and it slowed me down immediately. Even though my platelets were 1.7m when I was diagnosed I could run a mile in 8 minutes. After starting Anagrelide it immediately added 2.5 minutes to my mile run. Things just got worse from there. I soon began to have temporary numbness on large parts of my body, intense palpitations and a feeling of being very sick. Was taking I think 2 maybe 3 a day cause my hematologist at the time wanted my platelets in normal range. After a few months switched docs and backed off dosage to keep them under a million. Never recovered strength. Switched to peg after two years and felt better for a while but after 4 years had really bad reaction to it. On Hu for last 4 years now and feeling not so great either but better than those last few doses of peg.

You may want to see a neurologist as I ended up with a serious case of peripheral neuropathy almost 5 years ago. I suspect in my case it could have begun with anagrelide and been compounded with peg.

[Ritazz in reply to George1976]

I am also CALR and have also experienced temporary numbness. My trainer suggested I get a sleep brace for carpal tunnel which helps somewhat. Sounds like we might be outliers as we have the similar experiences with increased Anagrelide. My PC suggested all the symptoms I presented with are listed as side effects from Anagrelide. I will talk with my MPN specialist at my appointment next week. Thanks for your response.

[YGM123 in reply to Ritazz]

Hi, I’ve experienced similar symptoms/changes since mid January. I take Hydrea, 10 tablets 500mg over 7 days. I jog twice a week as well as doing other fitness classes. Joggiing has become harder, my thighs are sore, other leg muscles ache and I feel like I’m dragging my feet. I’m a member of a local jogging club and have stayed in our C25K Group as I know I can’t keep up with other members. I’ve spoke to my MPN specialist nurse at the end of January which resulted in me keeping a diary to see if any patterns to fatigue and there was. She mentioned it could be Muscle weakness.

Since last week I’ve changed when I take my tablets, now taking them at night and changed the days when I take two. I’ve not seen any benefit yet.

Had blood taken on Monday and have a follow up call next week. Have you seen any improvement since speaking to your MPN specialist. Thanks.

[George1976]

Sure thing. Anagrelide was very hard on my GI tract too. Be sure to eat well especially get plenty of fiber.