Essential thrombocythemia diagnosis and started taking Anegrelide

[Bellamomma1]

I’m a 54 yr old female, and I was diagnosed with essential thrombocythemia 3 1/2 yrs ago. Platelet counts were staying around 750,000 to 850,000. Then about 4 months ago my count went to 1.2 mil. My hematologists just put me on Anegrelide after last bloodwork was at 1.1 mil. Took 1st dose yesterday evening while my husband was home from work. The heart palpitations kicked in about an hour and half after taking the 0.5 dosage. Heart rate stayed at 95 to 103 range, and 1st blood pressure reading was 171/99, then I took 2 more times and it was 160/88, and 148/66. I finally was able to go to sleep and slept through the night. Should I be alarmed at the heart palpitations? My Dr had told to me call if I had them. Does that mean I can’t take the medicine? Or just watch the heart palpitations? I woke up this morning with a slight headache too. Has anyone else been on this medication to lower platelets? Any input on your reaction would help me greatly. Thanks!!

[Bobthecob]

Hello there, I am 56 years old and was diagnosed with ET nearly 19 years ago. I am currently taking Hydroxycarbamide. I have previously taken Anegralide, I felt heart palpitations and had severe almost debilitating headaches, my haematologist advised taking paracetamol for headaches. I eventually went back to Hydroxycarbamide due to side effects. Hopefully your side effects will lessen. Good luck

[Bellamomma1 in reply to Bobthecob]

Thank you for your response. I talked to the dr after 1st dose and he told me to take it every other day. I had no heart palpitations today form my dose. I took it earlier in the day & I kept myself busy planting flowers I had bought this morning. I think not concentrating and worrying about side effects helped me not be anxious. I’m only on 0.5 milligrams every other day. I will have labs drawn again in 3 months to see if it changed my counts. I also take 1 83mg aspirin per day too. So far so good!!

[Mazcd Partner MPNVoice]

Hi Bellamomma, you must contact your doctor about this, especially as you were advised to call if this happened. Maz

[Bellamomma1 in reply to Mazcd]

I did call him the next day, they told me to take it earlier in the day, and skip every other day. Today was my 2nd dose and it stayed busy planting flowers I had bought this morning and it kept me from being anxious over how I would react this time. So I hope it continues to not cause issues. I also take 1 83mg aspirin per day too. Hope the Anegrelide helps lower my counts. Bloodwork again in 3 months

[Wyebird]

Hi after being on hydroxicarbomide for three and half years I was eventually put on anagrelide as my dose kept on being increased to accommodate my constantly rising platelets. Albeit they were under 500. About 6 months ago 7 anagrelide a week were added. Then increased to 14. A Significant drop in my platelets occurred. Serious lightheadedness forced me to go back to 7 anagrelide a week. Subsequently my platelets rose.

With no alternative available I chose to up the anagrelide to 10 a week over the hydroxicarbomide.

Success- for two months I’ve been pretty stable.

I had an ecg and chest x ray before starting anagrelide. I take mine last thing at night. 1 a night with the extra 3 spread out over the week. When I take two I feel the palpitations more.

I don’t know your dose but I do know some people are unable to cope with the side effects. Maybe a combination of both meds could be an option for you.

My present results are so good I’ve even managed to drop a hydroxi.

Too early to see if this will be on going but at the moment this is the best I’ve felt for a twelve month so I suspect I might even be able to drop another.

You must seek medical advice if you are concerned.

Please up date me. I wish you well

[Bellamomma1 in reply to Wyebird]

I took 2nd dose today and it didn’t cause issues. I did call dr and he told me to take the 0.5 mg Anegrelide every other day. I stayed busy planting flowers so I didn’t get anxious waiting to see how I reacted. Thank you for your input

[Jmp89]

I’ve been on Anagrelide since February after being diagnosed with ET. I take 1mg twice a day, 1 at 430am and the other at 2pm. The first couple of weeks I was able to feel the palpitations and it was very scary. But I think initial fear was what made it that much worse, not the medication alone. I dont take it at night because it avoids being absolutely still and hearing the loud palpitations. Lol. I dont feel them as often anymore. Overall, I like Anagrelide for now. I plan on switching to Interferon within the next month just because I’m still young and plan on having kids.

[Bellamomma1 in reply to Jmp89]

I think that’s what happened the 1st dose for me was it was quiet and my mind started racing and it made it worse. 2nd dose I stayed busy and did fine!!