Anagrelide success 😃

[Maxamber]

hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections for 12 months at the highest dose with minimal platelet reduction (1400 - 1180), my count has been over 1000 for 2 years. I have successfully transitioned to Anagrelide in the last 10 weeks, a dose of 200mg a day is starting to work… my recent 4 week blood test results showed my platelet count has dropped 200 to 844 😃😃🙌 which I know is still high but if this rate continues I will be in the normal range in the next few months which is a huge relief . I’m tolerating the drug well and now that interferon is completely out of my system ( no more injections) I’m sleeping so much better. Still feeling fatigued some days but push myself to go to the gym for HIT classes 4 times a week as only control I have over the disease is to keep my weight, blood pressure and cholesterol as low as I can 😃 it’s hard to know if ET or the prescribed drugs we take cause some of the effects of living with ET…. There are increasingly more treatments available now so if your symptoms are stopping you from living your life the way you want to ask your consultant about other options. I thought I tolerated interferon well but now it’s out of my system I feel so much better 😃😃

[Solyesh]

Great to hear - thanks! Hoping things continue in the right direction.

[Mishie14]

I am very happy for you for finding success with Anagrelide. Wishing it continues to work well for you. Go Girl!

[Cja1956]

Great news!

[Mirror368]

How many capsules do you take to get to 200 mg a day? My hematologist recently gave me a low dose Anagrelide mg 2x daily, total 1 mg.. I am having a lot of headaches lately so I have not started taking it yet.

Great to hear it is working for you.

[Maxamber in reply to Mirror368]

hi , I take 4 a day . I had a few headaches but disappeared after a few days

[hunter5582]

That is great news. You are absolutely correct about how important it is to have options to treat MPNs. Individualized care is the best care.

[Doxy46]

Great news.

[Exeter21]

Well done it feels great once we get a reaction to start to reduce the platelets. Interferon Peg worked for me on a low dose but took some time. Like you I continue at gymn but had to change to easier classes as oxygen is not carried as quickly for me since MPN diagnosis . Julia . UK

[william-Indo]

Amazing 👍👍👍.Happy to your news with Anagrelide

Wish positive outcome will continue to achieve normal PLT.

Cheers

[conno61]

Hi, I'm on peg and it's doesn't seem to be working that well for me. How difficult was it to get anagrelide on the NHS ?

[Didgeridoo2]

Having had an unpleasant 4yrs on Hydroxy, it was replaced with Anagrelide because of anaemia a few months ago, with no probems, & feel normal for 1st time in those years, for which I,m so grateful. I also take 1 eopo injection per week to help red blood cells. After9 weeks on Anagrelide, my consultant told me platelet & red counts are around where he d like them for 1st time in those years, which was wonderful

news. I have myelofibrosis & an enlarged spleen.

[Anag]

Hi Maxamber,

I was on between 3 and 6 Anagrelide capsules a day. Each only has 0,5 mg. I assume you are taking 2 mg or 4 capsules a day. They worked immediately on me and I dropped 600 in 2 months. We never tried to go to normal range. That caused too many side effects. Fatigue, heart palpitations, quickly aging skin, nutrient deficiencies. My blood test kept hopping around between 500 and 950. Got tested monthly. After 5,5 years, the med had taken a toll on my heart and now i have mitral valve insufficiency

1,5 years ago I started Besremi (interferon) and it eventually worked well. With some minor side effects. I even got down to 253 gor the first time in 15 years. The side effects began to be horrendous. Brain inflammation causing painful tingling, pain and immobility in neck, shoulder, hands and feet. I could hardly walk or hold anything. I stopped cold Turkey. It took 2 month till platelets were at 650, then I tried lower Besremi. Now I have the symptoms again, but not bad enough to stop yet.

I hope you can tolerate anagrelide well. Keep a tab on your heart. Best taken with food. Studies show its more effective and palpitations were less because of slower uptake. I took the pills spread out throughout the day.

toi toi toi. Anag

[Zeppelin11]

Congrats on your progress! I'm 39 and have ET+CALR. I grew tolerant to Hydrea and couldn't tolerate the side effects of Interferon so I have been on Anagerlide for about 8 months. I seem to handle it pretty well but I deal with fatigue, headaches and occasional heart pounding. I agree with you, not sure if it's the ET or medication that causes the massive fatigue some days, but try to press through it. However it can get defeating when you are doing all the right things (gym, diet, vitamins, etc). Wishing you all the best!