I was diagnosed with PV in November and my counts (red cells, haematocrit etc) have been reduced by means of venesections. My consultant suggests medication (HU) to reduce my platelet count but I am reluctant to do this, and have seen that platelet counts can be reduced by thrombapheresis, a process mainly used to extract platelets from blood for the purpose of platelet donation, but which can also be used therapeutically for patients with very high platelet counts. Does anyone know why this method does not seem to be used generally in PV patients instead of medication? Does thrombapheresis involve risks/side effects that are greater than those of HU, or is there some other reason why HU seems to be the preferred option?
Does anyone have any knowledge/experience of red... - MPN Voice
Does anyone have any knowledge/experience of reducing platelet count by collection (thrombapheresis)?
Hi Ekkles I have ET, I had 2 sessions of plasmapheresis following my splenectomy to lower my very high platelet count until the Hydroxycarbamide got control of platelet production.. The process had no side affects but being stuck in a chair for 4 hours unable to bend your arms wasn't the best, also I had to travel from SW Sctoland to Glasgow to the Beatson Cancer Unit to have the procedure as they had the equipment.. Your consultant will prescribe Hydroxcarbamide becuase of the cost and it surpresses platelet production whilst thrombpheresis just removes platelets but does not surpress it. I had no side effects when I was on Hydroxycarbamide.
I hope this helps.
Thanks for the reply. On diagnosis of PV, Nov 2012, I had relatively low platelets, but after 9 venesections my levels are 860. My consultant told me this is a result of the venesections I was given?? I am hoping that medication will not be necessary at this point of my illness (I really want to defer medication for as long as possible) and would much prefer to have the platelets removed. Your reply has been very helpful and I will ask my consultant if there is any way I can have a session of plasmapheresis. Thanks again.
I was told that the blood from a patient with PRV could not be used again. So that is why they don't use thrombapheresis also it's a very expensive procedure. PATT
Hi Ekkles
I was really interested in your post abut platelet reduction and wonder whether you actually had this treatment in the end? Would like to know your experience as I also have PV with very high platelet count and want to avoid medication.
Thanks
Hi Mollycat
No - unfortunately I couldn't get my consultant to agree to this form of treatment so I ended up taking hydroxy for 8 months and then started on interferon. All blood counts are under control now but I wish I was medication free. That said the side effects have been minimal and I am keeping my fingers crossed that the interferon will reduce my "Jak2 levels" and I will need less (no???)medication. Good luck in getting the treatment for the platelets - I live in West Yorkshire, but maybe in a different part of the country this treatment is available.
Hi,
I am just guessing here but I regularly donate blood (it's my wife who has PCV) and i am allowed to make a donation every three months however i can also opt to make a platelet donation and the frequency can be up to 24 times a year.
The reason i can make so many more platelet donations is due to the time it takes for the body to replace lost platelets. I think the average body replaces red blood cells in thirty six days whereas platelet replacement takes around three days. This would probably explain why venesection is fine for lowing red blood count but not platelets otherwise you would have to be making donations every 3 days or so. Like i said though this is only my thoughts and i may be incorrect.
With regards to increased platelet levels my wife has regular venesection sessions to reduce her HB & HCT - they both seem well under control now however each time we visit her Platelet levels seem to have increased. Her hematologist explained that this is a natural reaction by the human body. The body believes it has lost blood (like you would in an accident) and increases platelet output to help in assisting the blood to clot which would normally allow for a wound to heal quicker following injury. Unfortunately that does not really help in the case of MPDs!