what is the long term option for pv management for elevated rbc 6.7, hct 51.9, plt 4.38, hb 16.7. This is the case of mine. At present doing phlebotomy only. I have antral erosion. So probably I shud not take aspirin. Can I take clopid?
After one phleb hct came down to 40 but after 15 days it is 42 at present. So how often i should do phleb and wt about long term management.
Starting treatment with phlebotomy-only is the norm for managing PV. It does take more than one phlebotomy to reach the target of HCT<45% men HCT<42% women. Periodic phlebotomy is how the erythrocytosis is controlled. Initially, they may be more frequent. In the long-term, you will find out what your need/frequency will be. It is important to understand what the phlebotomy is doing. In the short term, it removes whole blood which is then replaced by plasma. The intended benefit is to deplete your iron levels so your body does not have enough iron to make red blood cells. There is a balance that has to be found in being iron deficient enough to control erythrocytosis, but not so iron deficient that the deficiency causes problems.
This approach does not work for everyone. There are other options for managing PV. The need for phlebotomy can be reduced by medications. Some docs like to start with hydroxyurea, but it is toxic and some people do not tolerate it. There is movement towards using PEGylated Interferon as the first-line treatment for PV. PEG-INF does have some advantages over HU, but it does have its own side effect profile. PEG-INF is also a lot more expensive, so some systems of care would push to use HU first, regardless of patient preferences/benefits.
There are some very promising medications in development. Hepcidin mimetics (PTG-300) that help control iron metabolism/reduce erythropoiesis without phlebotomy should soon be available. There is a new form of PEGylated Interferon (Besremi) that is waiting approval in the USA (already available in Europe).
You are correct in thinking that there are alternatives to aspirin for a blood thinner. That is something to review with your hematologist, perhaps in consultation with your gastroenterologist. Do be aware that your body's response to blood thinners changes as you age. Some of of are at higher risk for hemorrhage, particularly over the age of 60. This is another situation where you have to find the right balance for your body. On size does not fit all when managing a MPN.
It sounds like you are new to your PV diagnosis. One of the most important things you can do for yourself is to consult with a MPN Specialist. Most hematologists do not have the KSAs to provide optimal/individualized treatment for MPNs because they are so rare. Here is a list of docs with the needed expertise. mpnforum.com/list-hem./ .
FYI - I have had a MPN for over 30 years. It was ET, but progressed to PV about 7 years ago. At age 65, I am still alive and kicking. Plan to continue to enjoy life, despite the challenges that come up due to the MPN and other health issues (aka - unique learning opportunities).
Please stay in touch and let us know how it goes. All the best to you,
Hi Hunter,
Your write ups are always interesting and am compelled to tell you that my husband (who has PV and is on aspirin & phlebotomy only regime) has been over-phlebotomised over the past three months which has brought his levels rather low (HCT 32.7 & HGB 9.1 with normal RBC 5.85 & PLT 295 and high WBC 21,600). In July since these were (high HCT 50.6% & high HGB 13.8 & high RBC 8.17 & high WBC 19,120 with normal PLT 316), he underwent 4 phlebotomies from July to September. The present low levels are making him more lethargic then before and we/doc are contemplating iron/multivitamin tabs to help bring up these levels. In your experience is this a good idea? or should we just wait for the low levels to rise up overtime?
Apologies for the deviation Spa1981
Thank you Hunter.
The same thing happened to me. My HCT got that low too. I went on iron pills for a few weeks prior to a major surgery to try to get to a better place. The iron pills caused constipation, which is quite common. I made the decision to stop them after the surgery and just eat an iron-rich diet. I had just spent an entire year being constipated due to the toxic effects of hydroxyurea and I was just tired of it. It took 14 months for my HCT to get back up to 44% from the low of 32%. Initially I tended to fatigue more easily, but did not have any other symptoms.
It is important to understand that with PV, our body's do not metabolize iron normally. The KISS version is that our body's will use all available iron to make red blood cells rather than store it as ferritin. When we take iron supplements, the ferritin levels will likely not return to normal, it will mostly make our bodies make more red blood cells. Note, iron deficiency and anemia are not the same thing. Anemia is a deficiency in red blood cells/hemoglobin. Iron deficiency is a depletion of the iron stores/available iron in the body. Iron deficiency without anemia is the goal of PV treatment.
I really cannot say which approach makes the most sense for your husband. It depends on which thing is worse - the anemia or the side effects of the iron pills. If I was going to take the iron pills, I would opt for the mega-low-dose iron supplements (25mg) to minimize the side effects. Your husband will have to work with his docs to look at his overall health profile and decide whether he can tolerate a period of phlebotomy-induced iron deviancy anemia. There are potential health consequences to anemia. There are also consequences to the iron deficiency that is the goal of our PV treatment. We have to weigh the risks/benefits of each of our options.
Al l the best to you and your husband. Please let us know how things turn out. We really can learn from each other's experiences.
I dont mind for deviation so long as I get the touch of deep answers. I hv cld now i got pv. I m 40 years old. So far I studied resources it appears that course of pv is not same for everyone. For some it is aggressive and indolent for others. So its a kind of lottery position we r now. only time can answer what lies in our fate. may be in future medication will be available to hault the progression. I heard about crisper but dont know much about it. As bro hunter opined I too found in internet that he can take few lose iron tab to tackle his ida.
Best of luck
I certainly agree, The answers to why we get PV and why the course of the disease can vary so much are emerging. We understand more now about the underlying genetics of the driver and non-driver mutations, but there is still a lot to learn. Some of it really is the lottery of life. We do not always get to know the reason. We can only control that which is in our control. That is why it is so important to make good choices to manage our health proactively.
All the best to you,
Hmmm..ranges are inconsistent for HCT. Most peculiar that my labs from St Joseph where I received phleb are 36-46. I clocked in at 46.1 all the way down from a peak of 58. Feeling much much more energy, clarity and peace of mind🙂. It took 3 phleb with 2 week intervals between.
Hi there is a belief among top haematologists that starting interferon early in PV is beneficial. It is a slow acting drug to start with and it it is usual to have venesections until it takes effect. Hunter has given a very clear explanation of what is happenin in your bone marrow. As I understand it the yow yow effect of venesections is not beneficial. It is better to find another way the stop the over,production.
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