ET and Anagralide

[eastwood1932]

I have been treated with HU for my ET for almost 3 yrs but due to leg problems my Heam has stopped the HU and wants to put me on Anagralide when the leg is fully healed. Are any other ET people on AG, what has it been like, do they want to do bone marrow biopsy?

Thanks

[Hayley2011]

Hi

I have ET and started Anagrelide in May, platelets 1600. Diagnosed August 2011, by bone marrow biopsy, only treatment & biopsy I have had. Symptoms of ET remain, although not a constant headaches, side effects I have is tinnitus in left ear, and problems staying asleep even though I am exhausted!

[Johnj]

Hi Haley2011,

I had a similar situation, I had cellulitis in my left leg. At that period I was on HU, which I understand prevent healing and stops the antibiotic intravenous drip from effectively combating the infection. I was 9 days in hospital and during that time I was taken off the HU, after the infection had cleared I developed an ulcer on my ankle bone. Anagrelide was introduce at this stage and my platelets were stabilised. Unfortunately about a year later I had a serious stomach bleed which was put down to aspirin and it was thought that the Anagrelide may also have contributed to the bleed.

I am now on a combination of Anagrelide and HU.but do not take aspirin.

To answer your question, I have a fairly good tolerance to both of the medications and I don't think it is necessary to have a bmb before going on to Anagrelide. I hope these comment s are useful. Best for the future.

johnj

[liarose]

what sort of probs have you had with legs. I am on HU for PV and have had cellulitis, ulcer and blood clot.

[eastwood1932]

Hi liarose, I had an op on the right leg to deal with arterial clots 3 yrs ago. Then a couple of months ago two areas on the scar line opened up and became infected. Taken off the HU to aid the healing but my Heam said he does not want me back on HU after everything is healed. I have heard of the risk of fibrosis with AG and that some Heams want annual/biannual BMBs to monitor this