High platelets

[kiwitraveller]

Hi all

I have moved back to NZ so no longer have amazing Guys Hospital treating me. Am concerned as when I left UK my platelets were hovering around 700. I was on 500mg Hydroxy daily.

Since then platelets have moved up and currently are 1048 and my Hydroxy has been increased to 2 x 1000mg and 5 x 500mg over the last couple of months. RBC 2.74, WBC 3.8, HB 94, HCT .30, MCV 108 and MCH 34.3. All other counts within normal range.

I feel fine bit of tingling in feet and occasionally a bit weary but just get on with it.

I am diagnosed with Prefibrotic Myelofibrosis first BMB 3 years ago showed level 1 fibrosis and a recent one has shown no progression age 70

My question is in order to get platelets down should I be increasing Hydroxy or look at alternative treatment. Have tolerated Hydroxy well but recently developed nausea in mornings. May be asprin or Hydroxy??

Thanks.

[hunter5582]

It sounds like it is time to review your treatment options. That is a very high does of HU. Adverse effects would be expected. GI effects (e.g. nausea) are common with HU. It also appears from your HCT that you may be anemic. When my HCT got down to 32 I felt quite poorly. The macrocytosis also appears evident, but that is expected with HU.

You do have other options, including the interferons and the JAK-inhibitors. You may find better symptom control and fewer side effects with another approach. Suggest prompt consultation with a MPN Specialist in NZ. Fortunately there are several listed.

mpnforum.com/list-hem./

All the best.

[kiwitraveller in reply to hunter5582]

Thanks Hunter good to get your feedback. My Hydroxy is 2 days pw 1000mg and 5 days pw 500mg I thought that was quite low!! Will check out MPN specialists in NZ but am going back to UK for 4 months in July so was going to see if could do a private visit to Guys.

[hunter5582 in reply to kiwitraveller]

Apologies! I misread your post. I thought it said you were alternating 2000mg with 2500mg doses. Not sure if I had a brain fugue or an eye fugue. 2 days pw 1000mg and 5 days pw 500mg would be a pretty common dose. I was on that for a while. Also had venesections every three weeks for a while as the HU was not working well enough. Ultimately I backed off to 500mg every other day, but I still had adverse effects even at that dose.

Many people find relief from adverse effects when they reduce the dose. I was not one of them. I ultimately found the interferons (Pegasys/Besremi) to be much more effective and far easier to tolerate. of course, there are others who find just the opposite. We are all different.

It sounds like you have a good plan. I would suggest having a MPN Specialist in both locations where you spend a significant amount of time. This way you will get two opinions and have a MPN care team expert to consult should you need to have a surgery or encounter some other medical issue. Should you ever decide to opt for one of the interferons or a JAK-inhibitor in NZ, I expect you will need MPN Specialist help to access it.

Happy travels my friend.

[Rem31]

When I was on 3 days x 1000mg and 4 days x 500mg of HU I was told (by respected mpn specialist) it was a low dose. Maybe there are other factors that influence what is considered low dose, patient by patient. I’ve never thought to ask that question.

Recently my dose increased to 5 x 1000mg, 2 x 500mg and initially I experienced some mild nausea. It soon passed and my platelets are now back at target level. I split my double doses between morning and evening, rather than two together, and it works for me.

Fatigue is an ongoing burden but that was a symptom that led to my diagnosis so I can’t blame it all on HU.

I hope you soon find a trusted mpn specialist. Confidence in how we are being treated is so important.