Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while being on a long flight. Asked my Dr & she approved it Wondering if there would be any concern if the phlebotomy would lower my hematocrit to 41 or lower as well as already having low Hbg.
Most people know me here but am 76 & just on aspirin & phlebotomy.
hard to say without knowing how your Hgb have dropped with previous venisections, one option that maybe worth considering is a smaller venisection ie half or less of normal one.
Hct at 41 shouldn’t be a issue , that’s where mine is currently and it’s fine, I am on meds though
You can look at your history of responses to phlebotomy to make a guess at how much your HCT will drop. Also look at how rapidly your HCT has been increasing. Properly interpreting your situation would require looking at all the erythrocyte values. An iron panel would help as well.
We set the range of HCT values for my care plan to be between 40% - 45% based on desirable values for a male with PV. Dropping lower than 40% would move me into the anemia range, which has happened at one point when I was over-phlebotomized (HCT=32%).
It is also worth noting that iron deficiency without anemia can also have adverse effects. I experienced several of the common adverse effects, loss of energy, reduced ability to concentrate. alopecia, and reactive thrombocytosis (PLT +200K). In monitoring your responses, it is important to realize you can be symptomatic even if your HCT > 40%.
The suggestion by ainslie is worth considering. Perhaps a mini-phlebotomy would be an option. Note that some places here in the USA will not do the mini-version.
Wishing you all the best.
Might inquire about a mini-Phlebotomy, been lucky with not having any symptoms other than a itchy scalp. Hope I don’t get too much of a spike in platelets as I’m currently at 695. Thanks again Hunter and all for your advice!
A small spike in PLT after losing a pint of blood would not be a surprise nor a concern. I experienced the larger spike over time with chronic iron deficiency. Happy travels
I'm on ruxolitinib and at my last blood test my hct was 33.1, hb 10.7, rbc4.12, plt193, wbc27. 8 Consultants don't seem concerned in fact they say all is good and I'm stable. I'm exhausted though.
Carol
Carol, what reason are your consultants giving for keeping your counts so very low, those counts seem far too low for PV unless there is a specific reason, its possible to reduce the Rux a bit by splitting pills if necessary, I can expand on that if interested, what dose are you on now
My white count refuses to come down and any reduction in rux would probably see them go up even more. As I understand it a high white count can be a clot risk as well as a high red count. A couple of years ago I had what was diagnosed as ischaemic colitis. A blood clot cutting off supply to the bowel. At my last phone appointment I specifically asked if there was any disease progression and was told no. I take 2x5mg tablets in the morning and the same in the evening. 20mg a day.
Carol
ah yes I think you mentioned that before, how long have you been on that dose and have your whites moved at all on that dose, what is your WBC count currently
I was put on ruxolitinib in the summer of 2019. The dose I'm on is what I was started at and hasn't changed. My spleen at the time was 15cm, it went down to 13 but hasn't been measured in over a year. I do get occasional discomfort from it so wonder if it's growing again. My whites at the time of starting rux were 30 they dropped fairly quickly to 17 and that's the lowest they have ever been. They then crept back up, mostly hovering in the high 20s apart from a blip when they reached 43 but I think they shot up that time in reaction to my last spinal fracture. Last test they were 27
Carol
thats very interesting Carol, I recal you explaining some of that info before. I suppose the tricky bit is as you mentioned is what is driving the whites up , it may not be the PV. I wish I could say something useful , I think its one for specialist docs , I have heard from another patient that there might be some specific tests which can help to understand what else is driving the WBC, it maybe worth asking around about that.
Its pretty unusual in a typical PV case with Rux to have such control of the reds but not the whites, they usually come down fairly evenly, it can take months but all mine are as if I didnt have PV. So there is maybe mileage in looking at other causes driving the whites.
Interesting on the 2x5mg. How are you paying for the Rux? In the US the pills cost the same ~$300 each retail for any size 5-25mg. So for here using 1x10mg would halve the cost. My direct cost is zero but I hate to send them more $ than required.
I'm in the UK so over 60s and people with certain health conditions don't have to pay for medication on prescription thanks to the NHS.
I dont pay, I get it on compassionate, I think the non splitting is more profitable which is the aim of a drug company of course . Most experts inc Dr V are fine with splitting, and it works, been doing it 6 years. I would be interested to hear why your doc is not okay with it. Whats most important is to get the right dose and if that means splitting so be it. I personally prefer if possible to have as near to the same dose am and pm , so rather than have 10+15, I prefer to have 12.5+12.5. Just a personal preference based on common sense rather than any proven science
I agree the no-split seems to be strictly financial. The Incyte rep just said "it wasn't tested" but no contra indication was offered. Dr V's endorsement says it all.
My Dr seems to think there is a coating on it, but the specialty pharmacy rep said it does not appear to have one. And I can taste it all the way down, tastes like "pill" so I agree no coating.
If one is worried about getting it down safely one could put it in the empty veggie capsules that are for this purpose.
Hi Wateron,
When I was initially diagnosed I had several phlebotomy 3 weeks apart. I did end up having lower Hematocrit and actually felt very good. I know others have mentioned here before that they also felt very good. I was able to go out and eat a steak which was delicious.
Enjoy your holiday, whatever you decide😎
Stubbornly high Hematocrit levels?
Back and forth anybody?
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