Advice needed please

[Assoonas]

Hey all, I'm new to this forum and was just wondering if anyone has ever been in the situation where hydroxy has stopped working for them. I was diagnosed nearly 3 years ago and all going well until November when my platelets started to rise again. I am currently on 14 500mg tablets a week which is double original dose but platelets still high.

[hunter5582]

This can happen for a number of reasons. You doc should be checking on any secondary issues driving the thrombocytosis up as well as assessing for signs of disease progression. It may also be that HU is simply not going to be an effective medication for you and other options will need to be explored.

We have seen an increase in my platelet levels from the 500-700 range to the 700-900 range. We rechecked JAK2 mutant allele burden (25% to 26% in one year) and ran a MPN Myeloid Panel (negative for all non-driver mutations except NF1 which I have had all along). Conclusion is that the increase in platelets is likely a function of the phlebotomy-induced iron deficiency. Since I am HU-intolerant, we will be considering options including PEGylated Interferon and/or PTG-300.

The good news in both out situations is that there are other options that can be explored. Please stay in touch and let us know how things unfold.

[Inca]

Yes me ,after 9 yrs of Hydroxy,now been on Jakavi for over two yrs.Worry not there are other options now that we're not available when I was diagnosed 12 yrs ago.Best to you.

[tracey13]

This happened to my husband his hydroxy made him so anaemic he couldn't function.He was extremely exhausted no motivation .

He eventually was changed over to ruxolitanib and it was a life changer for him he feels so much better.

He doesn't suffer exhaustion now and leads a normal healthy life .

Tracey

[Assoonas]

Thanks everyone for your invaluable advice. Miraculously my platelets decided to decrease this week so I think I must have had some sort of bug or virus so hopefully the hydroxy will continue to work for me. I am also a transplantee so some of the other options are not suitable for me and geing honest my haematologist is not the most informative/approachable person . Fingers crossed for now. Hoping everyone stays well and safe 🤗

[JaK2ET]

I hope that your treatment will continue to work ... but if not, perhaps you could consider getting a second opinion from an MPN specialist (rather than a regular haematologist) ... Good luck!