Anagrelide

[Bears23]

My MPN specialist is considering starting me in Anagrelide for side effects (headaches, vision disturbances,, Etc). Has anyone had any luck with Anagrelide helping your side effects? I’ve seen an ophthalmologist and Neurologist just to verify noting more serious.

Thanks in advance.

[Ratton]

I take anagrelide twice dailyHave e t but am

Asymptomatic.have got on well with

Anagrelide. Could not tolerate hydroxy.

My last platelets in May were 366

Told they are within good range.

[Bears23 in reply to Ratton]

Thanks, the doctor is hoping if I get my platelets down the headaches and vision issues may disappear.

[Fremia7]

Hi,

I was on Anagrelide for about 12 years, got on fine with it. I was also taking daily aspirin of 0.75mg.

I also suffered with the visual disturbances, ocular migraines I believe is the correct term.

Anyway, I found that the aspirin was the main help with the visual disturbances. Periods when I stopped the aspirin the ocular migraines increased.

I am now off the Anagrelide (on interferon now), but I still take the aspirin, and from my own experience I am convinced it’s the aspirin that helped with the headaches and visual disturbances.

That’s just me though, I guess everyone is different. If you haven’t tried an aspirin, I guess you could consider taking one for a period before commencing Anagrelide.

Just my penneth.

Good luck and hope you get sorted.

[Bears23 in reply to Fremia7]

I appreciate the information, I am on low dose aspirin and have been for years (guess I should have mentioned that), but still having headaches, etc. so maybe that isn’t doing the trick….for me.

[Mirror368]

I had daily headaches taking Hydroxyurea 500 mg. I was taken off it briefly for testing…all okay, Now platelets are 528 and I am taking 500 mg HU Monday/Wednesday/Friday to see if they slowly lower platelets without headaches. I do drink minimum 64 ounces of fluids on pill days and take it with breakfast.

Best wishes, Eileen

[Bears23 in reply to Mirror368]

thanks, I drink 64 oz of water a day also!

[ts75]

I second that it was aspirin that ended my ocular migraines, not anagrelide. I am anagrelide now because my von Willebrand factor was too low. But only because I’m stationed in the U.S. When I return to Denmark I will change to Interferon which should be better in the long term. I have done well on anagrelide, though. However, the first couple of weeks I had bad headaches and heart palpitations!

[HappyGirl25 in reply to ts75]

why is the interferon better?

[ts75 in reply to HappyGirl25]

you can find lots of info about interferon here but put very briefly, there is a chance it reduces the mutation you have and, it is speculated, that might reduce risk of progression to postET myelofibrosis. Also, anagrelide might have some bad long term effects. But it’s brilliant at reducing platelet count and fast!

[Ratton]

Have been taking Anagrelide for 3 yrs and don't have any problems-at all.

(Have E.T and could not tolerate Hydroxycarbamide.)

[HappyGirl25]

i have been on Anagrelide for 6 months now. I had some side effects during the first 2 weeks and then everything is good now. Only some runny nose sometimes. Good luck dear

[Bears23 in reply to HappyGirl25]

thanks!!