Anyone on the Givinostat Trial for PV?

[Whatsisname]

To all PV sufferers,

I am new to this forum, but would like to share my experience with others. I was diagnosed with JAK 2 + PV, 2 1/2 yrs ago, and have been lucky to have only been treated with aspirin and monthly venesection until last Summer. However my WCC and platelet count started to rise a bit worryingly, so I was invited to enter a trial of an as yet unlicensed drug called Givinostat which is an HDAC Inhibitor.

I have been on the Givinostat for 6 months now, and just finished the first part of the trial. So far the results have been fairly good, with a significant reduction in all blood parameters and the well known symptoms of PV have diminished as well, although fatigue is still evident. There are still one or two slightly concerning figures, e.g. slightly low renal function and platelet count, but overall I am feeling so much better than before.

If anyone else is on this trial and is willing to share their experiences I would love to hear how you are getting on.

Thanks,

Terry

[Paul42]

Hi

Do you know if spleen shrinkage is common on this drug?

Paul

[Whatsisname in reply to Paul42]

Hi Paul,

I cannot comment on whether it is common, as I believe patient numbers in the trial are very low and in any case I have no knowledge of other patients' experiences. However in my case my spleen has apparently not enlarged as yet. The evidence for this being from CT scans before and after the trial started. It is still early days for treatment on the drug, so longer term exposure may be needed to make any more informed judgements of its effect on my spleen.

Hope this answers your question?

Terry

[Paul42 in reply to Whatsisname]

Ok thanks, hope it goes ok for you