Hu platelets still rising

[JeniMac]

Good morning All. Just a quick one

My haemotoligist has upped my hu to 2000mg mon to Friday then 2500 weekends yet my platelets are still on the up how is this possible has anyone else had this

[ggrana]

Good morning JenniMac, yes I have the same problem . I’m taking 1500 mg because I can’t tolerate 2000. I tried for two weeks and had to stop I felt so awful I couldn't function. My platelets are between 1-1.2 million in 1500 and nothing is being done about it and I see a mpn specialist . I’m praying the ropeginteferon will be out soon and hope it will help. I’ve tried pegasys for 6 months and didn’t help me so doctor told me to stop it. Good luck to you , let me know how you do.

[Wyebird in reply to ggrana]

I’ve been on peg for about 6 months. Please explain How does ropegintergeron differ?

[hunter5582]

That is a very high dose. As you will likely hear, some people do not respond well to HU. People who a refractory to HU do have other options. PEGylated interferon, anagrelide, Jakavi are all on this list.

I believe you recently changed hematologists. Are you seeing a MPN Specialist now? If not, it is definitely time for a second opinion.

mpnforum.com/list-hem./

I am wondering what your cytoreduction target is. 600 is the recommended target now used by many MPN Specialists. silvermpncenter.weill.corne...

There is no clear relationship between platelet numbers and risk of thrombosis. The risk of hemorrhage is clearly related to elevation in platelets. Suggest it is time for a nuanced discussion of your treatment goals. What actual symptoms have you experienced? What evidence is there to support your goals for cytoreduction? Do the putative benefits of any proposed treatment option outweigh the risks/adverse effects? Hydroxy is a highly toxic medication and its use needs to be carefully considered, particularly at higher doses. That is not to say you should not be using it, just that the risks need to be considered as well. The other factor is efficacy. At some point, you may simply need to look at options other than a higher dose.

Hope that helps. Please do let us know what you learn.

[Solyesh]

Yes - I started on HU at 500 mg and slowly increased to 1,500 mg daily as my numbers (platelets) were stubbornly high. The original plan was to get up to 2,000 mg/day (my MPN specialist did not want to go above that dose) but I started having significant side effects at 1,500 mg (hives, nail discoloration, shortness of breath) - so we switched to Peg and slowly walked me back on the HU.

HU is definitely first line standard of care for ET when cytoreduction is needed, but we are fortunate today to have additional options. At 500 mg, and even at 1,000 mg, I was tolerating HU OK but it wasn't doing the job for me as far as platelet reduction.

The good news is that there are options as our diseases are as individual as we are. I am obviously not an MPN specialist but at that dosage I would imagine that one might expect some significant reduction - if not, which was my case, perhaps a different approach might be warranted.

I switched to Pegasys and saw improvement in my platelets immediately (which also is different for everyone as for many it takes a while to see Peg's effectiveness). I have so far tolerated the Peg much better than I did HU

Good luck!

[JeniMac]

Thanks for all your great comments I have to go for a abdomen scan on Monday and since upping my meds I feel lousy so defo need to change course. I have been given a leaflet about Anagralide so maybe this is the next option also I have a B12 deficiency so starting them injections on Monday. It's naff getting old hope every one has a great day 💖

[william-Indo]

You could ask doctor about combination of Jakafi and INF therapy.

haematologica.org/article/v...

[jointpain]

When my wife was first admitted to hospital, her platelets were around 1.9 million, the hematologist had her on five hydroxycarbamide a day and didn't see much of a decrease, until he added Anagrelide, that was over three years ago. For the majority of the past three years she's been on 1 hydroxycarbamide every other day and three anagrelide a day, keeping her platelets within normal limits. Maybe worth asking about Anagrelide, as I think it targets the platelets more than other cells.

[Meatloaf9]

Another post today called "some good news" is by a person who took both HU and Peg and got very good results. We are all different. Maybe that combination is something to discuss with your doctor. My understanding is that in some people it can take over a year to see results with Peg Interferon. Good luck to you and keep us informed how you are doing.