Interval Between Venesections

[JP2018]

Hello everyone. I was diagnosed with PV almost a year ago, my treatment has just been low dose aspirin and venesections (whenever my hemoglobin exceeds 15). The time interval between venesections had been steadily increasing from a few days at first, then 35 days, then 77 days, then 148 days. However, my most recent venesection on 9/26 was needed after 63 days. I was a bit discouraged that the time interval between venesections decreased for the first time. I was just wondering if anyone else has had the interval between their venesections fluctuate up and down and if it's indicative of anything. Thanks!

[Sallush]

Hi

I’m a fellow PV patient. I was diagnosed about ten years ago. I was started on aspirin only - no venesection required. Then I had blood clots so my meds were changed to Rivaroxaban (blood thinner) and Hydroxycarbamide (low dose chemotherapy). And venesections. Regularly- every three months for about a year and a half. Then when the meds dosage was correct, the venesections stopped. And now it’s very intermittent- occasionally I still have one depending on the results at my three monthly check up.

It’s doesn't appear to be indicative of anything - just how your bloods are at the time of the test.

Best wishes,

[Kari1961]

Hi

I'm also a fellow PV patient (Jak2+) - I was diagnosed 5 years ago (treatment aspirin and venesection)

When I was first diagnosed I had venesection weekly for about a month, until my HCT was under .45. I then went to needing venesection every 8 weeks, this remained consistent for a number of years - until I saw a locum haematologist in April of this year, who thought that as my HCT was .467 I didn't need one (I had previously had venesection at .468) I queried his decision but he remained adamant and booked me in to see my haematologist in 8 weeks time. At that appointment my HCT was .52 - I then needed venesection monthly for 3 months until my HCT was again under .45. My appointments have now also changed to every 6 weeks... but I'm hoping that they'll go back to 8 weeks after my next appointment at the end of October.

Apart from the locum haem glitch my levels tend to stay pretty consistent.

Best wishes, Kari

[AirconBob]

I also have had Jak2 pos PV for six years with venisections and Hydroxy . The intervals vary between seven or eight months and a couple of weeks depending on haematocrit and platelets levels. I prefer venesection (less collateral damage) but if platelet levels rise hydroxy is better. Just a matter of what works best for you - we are all different.

[harleydavidson]

I have had PV for 15 years and take aspirin and have venesections when needed. This might be six months or 2 months, it never follows suit for me. I once went a whole year without one. Hope this helps. Mel x

[hunter5582]

Also JAK2+ PV - age 64. Since there are a number of factors that can affect hematopoiesis, some fluctuations are to be expected. A single change in schedule is just not enough information to base anything on. Expect this is one of those time will tell things.

I was on phlebotomy every three weeks. A few weeks before a major surgery un June, my hematologist called to say "we have been over-phlebotomizing you." All my iron levels were low, with ferritin so low they could not even measure it. This put me into Erythropenia, where I have stayed for nearly 4 months. Took an iron supplement for a few weeks, but could not tolerate the side effects. My last course of hydroxyurea appears to have compromised my intestinal endothelium (long term). I would rather be anemic than totally stopped up.

I am fortunate to be pretty mildly effected by the PV, likely due to my JAK2 mutant allele burden only being 25%. Have had an MPN (ET then PV) for over 30 years - never any thrombosis. Turns out in my case, when my platelets go up. it is my risk for hemorrhage that goes up - not thrombosis. Saw a MPN Specialist who took me off the HU (benefits not worth the risks) and took me off the aspirin. I had experienced excessive bleeding and bruising for years. Turns out my von Willebrand factors drop whenever my platelet levels go up. The doc rather prophetically said "You really do not want to get a brain bleed." A couple of weeks later, I was diagnosed with a hemorrhagic brain tumor (that is what the surgery was for). Taking aspirin when you have had some bleeding in the brain is not such a good idea. I am on a phlebotomy-only regimen from here on out - until things change.

It all just goes to show that we are each unique in how our MPN presents. We each need an individualized treatment plan that reflects our individual needs and priorities. Hope you get your individual situation figured out ASAP. All the best.

[JP2018]

Thanks everyone for your thoughtful answers! I appreciate it very much and it puts my mind at ease. Best wishes to all!

[Johnsb]

I'm JAK2+ with PV. My hematologist agreed with me to keep my Hgb under 15, for the last year I have been at 8-week intervals and that seems to keep me on track. I am on aspirin and 500 mg hydroxy daily. My level does move around and sometimes I have gone for 24 weeks without a venesection. Lately though 8-weeks seems to be the norm. No reason that I can pinpoint as why it changes. One thing I have noticed is that my blood pressure will start to spike up as the need for venesection draws near. I have my levels checked every 8-weeks. I know that my level will jump dramatically at times up and down over a couple of days. Only God knows why. Good luck to you!

[mark382]

Had PV 11 years and on aspirin and venesection. Time between venesection varies. Usually 2 or 3 a year. This year I had 2 in January (2 weeks apart). Nothing needed in March or June. Iron tablets in June as iron too low. At September appointment needed 2 venesection, 2 weeks apart. Next appointment in December, have to wait and see what happens. Either things are getting worse or they go up and down. I don't tend to worry about it as there's nothing I can do. Have total faith in my haematoligist.