Hydroxycarbamide

[SUFCbaldy]

I've just had a telephone consultation with my Haematologist. I was diagnosed with PV a year ago and was prescribed 1x500mg of Hydroxycarbamide daily. About 12 weeks ago, as my platelets were too high, I was told to take 2 at weekends. Today I was told my platelets were too low and to stop taking Hydroxycarbamide. I forgot to ask her what the reading is, but she is sending me the results.

She appeared to be a unclear in her own mind why this is happening (could be an infection) and before she sees me again in 4 weeks I will have a more extensive blood test.

Looking for advice if anybody else has experienced this and what it could mean

Many thanks

[hunter5582]

That pattern of response does seema bit odd. It is hard to say without knowing more. How high was too high? How low was too low? A dramatic change (e.g., PLT > 450 to PLT < 150) would be most unusual based on the small dose change. Note that an infection would likely raise PLT levels if it had an impact.

Please do let us know what you learn.

[SUFCbaldy in reply to hunter5582]

Hi Hunter.Thanks for your reply. My PLT count on 28th June was 592 10⁹/L. It will be interesting to see how low the count was a week ago. I should get the results within a week

[hunter5582 in reply to SUFCbaldy]

I would suggest reviewing your treatment goals with a MPN Specialist as part deciding next steps. Platelet levels do not correlate with thrombosis risk. There is no particular value to having PLT < 450 for most people with PV. The risk factor is the erythrocytosis. Targeting HCT < 45% does have a strong correlation with reduced thrombosis risk.

If you find that combining HU with venesections is not helping you achieve your therapeutic goals, then there are other options to treat PV. Unfortunately, Pegasys is currently in limited supply. The other options, Besremi and Jakafi can be difficult to access in some healthcare systems. You would need to discuss options with a MPN Specialist. Note that not all hematologists are MPN Specialists. mpnforum.com/tsr-the-list/

Wishing you all the best.

[Bluetop]

When I started on hydroxycarbomide it took some months to find the right doseage and even now one extra tablet or one less can cause a seemingly disproportionate swing in my results. However when I started the treatment the haemo saw me every fortnight to try to find the right balance of medication. Good luck with it.

[Jamesxyz]

Hi,

I would definitely call the provider and ask for an explanation.

I'm assuming that your other counts are ok, RBC, WBC, HCT, etc ?

Just remember people here have opinions, but it's NOT a substitute

for proper medical advice.

Just my 2 cents.

[SUFCbaldy in reply to Jamesxyz]

I agree with you about an explanation. It did take me a bit by surprise. I find that is one of the problems with telephone consultations, you have all your questions ready, then something like this blindsides you. I will definitely be more prepared in 4 weeks time

[ALlady]

It is important to remember that each of our journeys is our own. I too have PV and am on HU after a number of years of aspirin therapy I was placed on HU last November after a significant increase in platelet and HCT levels. Over the last year I have fluctuated up and down with levels and HU dosage has been adjusted accordingly. My most attentive hematologist saw me weekly, then biweekly, then monthly as this was monitored. I have gone from 1000 a day to 500 Monday , Wednesday and Friday now for the last four months. At one point early on I had a two week HU vacation and an iron infusion.

Now beautifully stable for three months, I don’t go back for 8 weeks. My arms have felt like pincushions at times, but I appreciate my teams’ level of care. I do receive a printout of my bloodwork results at each appointment and am provided thorough explanation each adjustment.

I hope you can receive this same level of care.

[john0084]

Hi sufcbaldy,I go along with the previous comments, how we react to the hydroxy varies person to person. Like you I was started on 9 hydroxy a week then after about a year or so my platelets dropped low to 50, I also new this by the bruising on my lower legs, anyway they reduced my dose to 7 then a little while later just 5 a week. I've been stable on that dose for a few years now. I think it was hunter who mentioned a while back that hydroxycarbamide has low therapeutic index, strong stuff in small doses.

[SUFCbaldy]

Thanks for all your comments. I was concerned about my Haematologist apparent surprise about my drop in platelets. Reading that other people have had problems reassures me. I'll certainly be armed with lots of questions at my next consultation .