Good news today 😊

[Mauritiu]

I was diagnosed with PV in September last year. Had venesections over September/November every 2 weeks which brought my hematocrit to 44. It crept up slowly to 45.7 and had two venesections towards the end of February. My Hematocrit is now 40.6. I have been feeling so much better past few weeks 😊 but still tired at times.

Still new to all this and learning. I was wondering how everyone else's Hematocrit levels are doing and if they drop like this. Is this they way things go? I guess everyone is different 😊

Just feeling happy it's lowered and wanted to share! I hope everyone is doing well 🙏

[hunter5582]

The more venesections you have the more iron deficient you will become, and the better HCT will be controlled. You may well find you reach a certain stage and then can get by with just occasional venesections. We are all indeed differently. Many do just fine with a venesection-only protocol and find it preferable to the meds used for cytoreduction.

hope you find this works well for you.

[Mauritiu in reply to hunter5582]

It's still early days I guess to see how venesections work out for me. I used to give blood years ago but gave up because I often felt awful after. I did feel rotten last year after fortnightly venesections till my hematocrit reduced. I discussed this with my haematologist and asked about iron levels also. We discussed meds if I was not going to tolerat venesections. I feel so much better just now, Since I am only seven months in since diagnosis, I guess it's let's see how the next few months goes.

My platelets are still a bit high at 799 today.

Thank you for your reply.

[hunter5582 in reply to Mauritiu]

Trying the venesections certainly makes sense for now. You can monitor and see how you tolerate the iron deficiency. Do note that venesections can increase your platelet levels. The body reads the venesection as a bleed and produces more blood cells. this is temporary. the iron deficiency can also cause an increase in thrombocytosis. This is longer term. In my case it bumped my platelets up by about 200K. The venesections did do a good job controlling the erythrocytosis once my iron levels were low enough. I was ultimately not able to tolerate the chronic iron deficiency and moved to treat the PV with IFN . Started with Pegasys and switched to Besremi.

Like you noted, we are all different. The venesections worked for a couple of years for me. it was way better than being on hydroxyurea which I really could not tolerate. IFNs are way better for me.

Hope everything goes well for you.

[EPguy]

As Hunter says, venesection may work well for a long time. But we do see here the iron levels are often a problem with prolonged or frequent treatments.

Another concern is the high PLT you have. If your Dr is ok with it, maybe so issue. But you would want to watch it carefully if you do not treat it. Venesection is not typically intended to reduce that:

rarediseases.org/rare-disea...

<<,Phlebotomy may be the only treatment necessary for some people, for many years. However, this procedure does not treat elevated platelet levels (thrombocythemia), elevated white blood cell levels (leukocytosis), itchy skin or gout. In some cases, phlebotomy may contribute to elevated platelet levels. Phlebotomy is also known as venesection.>>

[Mauritiu]

Thank folk for you helpful replies I am keeping an eye on my platelet level. My Dr is not concerned till they reach over 100k

I am hoping venesections work for now.

Have a good day where ever you are.

😊

[Orangeboykitty]

The more venesections you have, the lower your iron will be and the higher your platelets will go. The reason is when you have a venesection, your body thinks it's bleeding to death and automatically produces more platelets. This scenario may be fine for awhile but eventually, as you said, when platelets reach over 100k, most doctors want to put people on medication of some sort. That allows iron levels to rise somewhat and keeps platelets in check.

[Mauritiu in reply to Orangeboykitty]

Thank you for you reply. My Dr has said I will end up on meds eventually, hopefully not anytime soon. Still new to all this and the thought of meds terrifies me just now.

Take care.