Combining Hydroxycarbomide with venesections?

[Imkerin]

Hello everyone, I am seeking your advice again, so glad you are here!

I have PV, diagnosed 2021 which was initially controlled through regular venesections. At the beginning of this year, having reached the age where I became 'high risk' I started taking Hydroxycarbomide. I am still at the stage of finding the correct dose with various increases and decreases along the way. At the last blood test the HCT had risen to .45 and HGB and RCC also continue on an upward trend (having been previously reduced to within normal parameters). All other numbers looking steady, platelets 300. My MPN OP/TC isn't for another week.

My question is; might a venesection be of more therapeutic value at this stage rather than an increase in the Hydroxycarbomide? It has been a year since the last one, before commencing medication.

I look forward to your thoughts.

[hunter5582]

The short answer to your question is that combining venesection and a cytoreductive agent like hydroxycarbamide (HU) may be an effective treatment approach. It is not uncommon to use a combined approach.

The more complex and accurate answer is something to review with a MPN Specialist who can look at the specifics of your case. You would need to consider the adverse effects you may be experiencing with HU as well as any adverse effects you may have encountered with venesection-induced iron deficiency. It would also be important to review the efficacy of each intervention. While HU works for many people, some are refractory to it. Fortunately, there are other option should the adverse effects or efficacy ber an issue. Should you need to consider another treatment option, then you can do a risk/benefit analysis of your other treatment options.

Suggest you discuss the option of combining an occasional venesection with HU with your MPN care team. It is a very reasonable approach that would avoid needing to consider a higher dose of HU. Working with your MPN care team, you can make the decision that is in your best interests.

[Imkerin in reply to hunter5582]

Thank you Hunter. I had a discussion in the appointment this week and it was left up to me to decide either to increase medication or have a venesection. I did become iron deficient when on frequent venesections at the point of diagnosis and this was not pleasant. I sought a private blood test to check my current iron level and it has gone up quite significantly to 21.5 from 12.5 in April this year. I am booking a venesection.

[hunter5582 in reply to Imkerin]

That sounds like a good plan. Wishing you success with it.

[saltmarsh]

Hunter's advice is spot on. I've been on HU for 2 years now. Over a year ago my new doctor stopped the venesections due to a rather serious iron deficiency that developed because my now former doctor did not call for all of the tests which would have identified the problem. So far the HU has controlled the PV. As is often pointed out here, this disease manifests itself quite differently among us and a specialist should carefully monitor you when changes are made to your treatment regimen. Good luck

[LIGEBA in reply to saltmarsh]

saltmarsh you said your venesections were stopped, "due to a rather serious iron deficiency". Can you share how low your iron and ferritin numbers were? Does your new dr. check your iron on a regular basis now? Thank you.

[Imkerin in reply to saltmarsh]

Thanks Saltmarsh, yes, I've just replied to Hunter. I am under a specialist MPN team though I have to say it doesn't always lead to continuity of care with a different clinician at each appointment and not they don't always agree with each other. It has proved hard work to keep hold of all the threads. This Forum has been invaluable.

[Innessant]

I am the same age and situation as yourself.I balance the two with more venesections as required. It is a simple, tried and tested approach. I feel great after 10 years doing this (HU in last two years). I do not overstress at higher HCT readings. How you feel is a good test.

[Imkerin in reply to Innessant]

Thank you Innessant. I think combining medication with occasional venesections will be my preferred route going forward. Keeping an eagle eye on iron levels - being iron deficient is no fun.

[AirconBob]

I Have Jak2pos PV, and have been on Hydroxy and Venesections for nine years. I have always leant towards venesections because there are no side effects, it feels 'safer' to me. Of course there is the risk of elevating platelets, mine have always been on the high side, but not excessive. I am now in the process of changing to Ruxolitinib, but just a week in, too early to see results yet. At least no major problems so far, watch this space....

[joe38 in reply to AirconBob]

Hi AirconBob, sorry to bother you, but I too have been on Hydroxycarbamide for 9 years; I am concerned about long term consequences of this and wondered what had prompted you to switch to Ruxolitinib? I share your opinion of venesections, I've had many over the years and like the simplicity, unfortunately I can't manage on them alone!Regards

Joe

[AirconBob in reply to joe38]

Hi Joe. I have been following the approval of Ruxolitnib by NICE, knowing that it would probably be better for me than Hydroxycarbamide. It was approved for those with PV if they were 'resistant or intolerant' to Hydroxycarbamide. I have always struggled with it, so fitted the criteria. Hopefully all PV sufferers will be offered Ruxolitinib soon as the best available therapy.

[joe38 in reply to AirconBob]

Thank you, I don't have any problems or side effects that I'm aware of with Hydroxycarbamide, it's just the anecdotal evidence of long term problems that concerns me. I'll keep my ear to the ground.

[joe38]

Hi, I am in a similar situation to AirconBob, in that I was diagnosed PV Jak2 positive nearly 10 years ago. I was 52 years old at the time. HCT was 67% at diagnosis and I had 12 venesections in the first 4 months.Three months later, due to rising platelet counts and fatigue, I started on Hydroxycarbamide and over the course of the next 12 months I combined this with another 8 venesections - so 20 venesections in total over the first 2 years.

I too would prefer to manage on venesections alone, without chemical intervention, but it's not possible for me. About 12 months ago, my HCT increased suddenly so I have started venesections again, I'm about to have my 7th (so 27 in total). This to me is preferable to increasing the Hydroxycarbamide.

But we all tolerate things differently don't we? I am lucky enough to be able to exercise regularly and eat and drink relatively sensibly, all of which helps. I also feel that I am well cared for by the NHS in South Yorkshire, UK, and I have faith in my local haematology team.

Good luck Imkerin; I'm aware that I've shared a lot about myself, I hope some of it is relatable to you.

[Imkerin in reply to joe38]

Thanks joe38. It is always so helpful to hear other peoples experiences. I have to say if I had had as many venesections as you I would be on the floor!! I am feeling positive about moving forward with the plan of combining medication with occasional venesections. The ultimate aim being to stay on the lowest dose of Hydroxy as possible.