Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down.
The result? Exactly the same. 43.6 (My goal is 42 or lower as that is recommended for women.)
I'm enjoying have some iron in my body, but I don't see how I can avoid another PB without increasing my dose of Besremi. And, I'm hesitant to do that as my WBC is 5.5 and PLT is 420.
Like Hunter and others in this community on this new drug, I'll continue to navigate the best approach for my QOL and health with no clear roadmap--yet we have each other.
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Elizka
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5 months isn’t long if using a INF medication, I know one person who was on Peg high dose 180mcg for 2 years before getting total Hct control, hopefully yours will be a lot quicker.
Same here. I was on Peg for around 18 months before settling on an effective dose. It almost seemed like the PV was adapting to each dose that had been previously working. 135mcg ended up being the magic number for me before switching to Besremi and now it's like starting over from scratch. I've been on Bes since January this year. Now at 375mcg here in June and 1st time I haven't needed a phleb. Waiting to see what happens.
Finding the right balance of medication efficacy and side effects can be tricky. The good news is that with WBC at 5.5 you are still inside the reference range (3.98-10.01). PLT is still a bit high, though lower for you. PLT could drop by another 200 and still be in reference range.
Note that my WBC is currently at 2.65 which is considered acceptable even though it is below reference range. It is important to look at the specific numbers of the WBCs. Neutrophils (anti-bacterial) and Lymphocytes (anti-viral) are important to watch. The thing to understand is that your body can still mount an immune response even if these leukocytes drop below reference range. My docs have set the following parameters.
NEUT must stay >1.00
LYMPH must stay >0.50
So far I am staying within these parameters at 150mcg Besremi.
Like you, I feel much better with my iron levels higher. I am hoping that the current 150mcg dose will do the trick. If not, I will lilley opt for a mini-phlebotomy like you tried. I sure hope rusfertide becomes an option for us to manage the HCT without iron deficiency. I am thinking a combination therapy of Besremi + Rusfertide could work well for many of us.
Somewhat confused on WBC. Mine is currently 11.8. When I look at the Neutrophils I have 2 readings. Neutrophils % 79% (Range 42-76) & Neutrophils auto-count 9.3 K/uL (Range 1.8-7.9). For Lymphocytes I just have a % of 11% (Range 15-47) These don't seem to match what you show for recommended levels unless my testing is done differently than yours.
The reference ranges can vary by labs. These values are from my lab. They are not the same as your lab
WBC 3.98 - 10.01
Neut 1.56-6.13(10^3/uL) 34.0-71.1%
Lymph 1.18-3.74(10^3/uL) 19.3-53.1%
The absolute count is how many of the blood ceils are present per microliter. The percentage number indicates the percentage of all WBCs each type of blood cells represents. Add all the %s and they will equal 100%. (NEUT + LYMPH + EO + BASO + IG = 100). The % count helps understand the balance of your WBCs. The absolute count is a bit more useful in determining what exactly your status is.
Lymphocyte primary purpose is as an antiviral leukocyte. Neutrophil primary purpose is as an antibacterial leukocyte. You can see temporary elevations in any type of leukocyte due to an infection. This is normal function. A sustained elevation in any type of WBC (leukocyte) in the absence of infection can be part of how a MPN presents. I have experienced mild basophilia for years as a part of how my MPN presents.
Based on the reference range used by both of our labs.
WBC of 11.8 = Leukocytosis. Neut of 9.3 = Neutrophilia. It is not really possible to assess the Lymphocyte level without the absolute Lymph count. Just as a guess, since the Neut levels are high, the Lymph % may be low, but the absolute count may be fine.
As to why you are experiencing leukocytosis/neutrophilia it could be the result of an infection or part of how your MPN presents. This is an issue to review with your MPN care team. It is very reasonable to want to know what is going on and what it may mean for you and your treatment plan. Suggest you review this with your hematologist at your earliest opportunity.
Meanwhile, this video may help you undertsand your CBC in more detail. It is very helpful to have a better understanding when you talk to your care team.
Hi, from what I have been told and read on this site it seems that it could take 1 to 2 years to achieve the best result on interferons for control of all blood counts. Personally I would not go thru a phlebotomy for only 250 ml, that's just me, I don't think you can control the Hct that precisely and if it goes a little below 42 or 45 for males it shouldn't matter all that much. I hated the one TP that I did have so that if/when I have another one I will request 500 to 600 ml be removed (I weigh 230) to lessen the frequency. I think that a 450 ml TP usually lowers you Hct by about 3 % for the average sized adult. That was exactly the amount my one TP dropped my Hct. My goal is supposed to be 45 on Hct when it went to 42 the mpn specialist said that was great. I feel better when my Hct is 46 to 48 than I do at 42 (my iron levels are normal). Keep in mind that everyone is different. I stay about 43% Hct on a steady dose of HU, so far, 9 HU per week. I recommend discussing it with your mpn specialist and if you have faith in them then follow their advice.
I only ever get 250ml for my phlebotomies. I went from 45/46 range to 40 HCT with just 250. I hate yoyoing back and forth above then below as when I get low iron it exhausts me, I did come back up to the 43/44 range within a few months but also because I was taking a bit of iron. But if I had done a full 500ml I would have been wiped out.
Hi, did you go from 45/46 to 40 with just one phlebotomy of 250 ml? I only had one phlebotomy of 500 ml and it dropped my Hct from 46.9 to 43.9. It had no effect on me as far as symptoms after the phleb, My doc said they could go up to 600 ml but thus far I have not needed another one. We really are all different in our response to medications and procedures. Best to you going forward.
Yes, though my iron levels are already extremely low so that might have given the larger decrease. As I took some iron it started coming back up.
my Dr is recommending I go to Hydroxyurea to lower my HCT so I can bring my iron levels up and not feel so tired. I've been resisting that but she is insisting that is the typical way to handle higher HCT if being low in iron makes me too tired.
HU is one of the ways to lower HCT but not the only way. Besremi or Pegasys (the PEGylated Interferons) are the other first-line choice. There is also Jakafi as a second-line choice. As you may have seen on the forum many of us are having much better success with one of the interferons. I found them to be both easier to tolerate and more effective than HU or phlebotomy-only. I feel so much better on the IFNs, there is really no comparison to the other options. Add to that the chance for the IFNs to be disease modifying and reduce our risk of progression.
We are all different and tolerate these treatment options differently. Before making a decision I would urge you to consider all of your options. That includes clinical trials. There is a new drug (rusfertide) that is a very promising different approach. Our options are looking better all the time.
As Hunter says, you have decent margin to increase the dose, if WBC and PLT are the concern. Like Hunter, my WBCs are too much of a good thing (last CBC Lymph=1.07 on a very low Bes dose).
Your PLT seems to have a good margin for reduction if the dose goes higher. My provider in fact uses 369 as a top PLT range, lower than most, I don't know why.
With Besremi, many of us shared and mentioned that their CBC numbers seem to be experiencing a trend towards improvement or near-normal level for all of those monitored blood parameters. Wouldn't it make sense that I would opt for no phlebotomy when the hematocrit is within "reasonable" level of the guideline (which is 45 HCT for men). For example, at 46 HCT just a point over (the guideline), I would wait until it gets to 47 HCT, and therefore have less frequent phlebotomy.
When you listen to presentations of MPN experts in youtube.com about the hematocrit level goal; the purpose is to minimize any incidence of blood clot or stroke/cardio related issue due to blood getting "thicker".
In the case of those of us whose number have improved to near-normal due to Besremi, are the risks for blood clot and stroke/cardio remain high that the 45 HCT guideline for men has to be strictly observed? Or we can use the guideline of non-MPN patient which in the laboratory that I go to is thru 50 HCT reading? I have asked this question to my MPN specialist, and he is very good to excellent adviser; and his response was that we will talk about it if that condition would happen. I guess that if that condition would present itself in the future, he would check for any symptoms and my physical condition before providing an opinion; and then let me decide if I would like to postpone a phlebotomy.
Just putting in my 5 cents to the hematocrit level in relation to postponement of phlebotomy situation.
<<The study randomized patients with polycythemia vera with an aim to maintain the hematocrit level below 45% or not to be so strict and allow the hematocrit level to be between 45% and 50%. This prospective, randomized study was stopped early, after about 3 years of follow-up, because it was quite clear that the group that had tight control of hematocrit below 45%—had fewer thromboembolic events, or fewer clotting episodes. This led to fewer deaths from the complications of having those clots.>>
Stopping a study early is not common and points to a strong conclusion, that we should not follow non-MPN range for HCT.
Some members are having trouble with this HCT balance on INF.
But your point also makes sense, is it ok to have a short period just a bit over 45? Conversely near 50 seems clearly not desirable at any time as they call it "tight" control.
There’s no problem having short term HCT >45, depending on your age and past medical history. My HCT reached 52 while adjusting the Pegasys dosage. I didn’t have any phlebotomy during this 2- 3 months period. It was definitely the right decision in this case, in order to objectively control the IFN effect on the blood count.
Your point makes sense, the reports are all averages. Do you know which risk factors you had that allowed your Dr to feel comfortable with the high HCT period?
I understand Dr wanted to be able to measure the INF effect with minimum other variables, is that right?
No known risk factor as far as I know. Plus the fact that my hematocrit was above 65 at diagnosis. As you said, haems need the minimize the number of variables to evaluate the IFN effect.
You’re absolutely right.After 2,5 year on Pegasys and 2 years on weekly injections of 135mcg I didn’t notice any side effects. My last HCT last month was still at 36. Funny enough I don’t feel a huge difference between a 67 versus 36 HCT in term of QoL, although I’m now asymptomatic.
Hi EPguy,Everything is low: lymphocytes at 850 and neutrophiles at 1820. HGb: 12,4 and platelets at 170.
The HCT at diagnosis was precisely 65,9 and RBC 8.3...Phlebotomies were stopped when it reached 47. It went to 48 the week after and then suddenly dropped to 44, 43...38 after 5 weeks on Pegasys 90. Unfortunately I developed thrombopenia and the IFN dose had to be lowered at 45. It normalized quite quickly tough. The 45mcg dose stopped to work after about 5 months (HCT at 52) and was progressively upped to 90 and 135mcg. The blood count is stable for 2 years. Never had thrombopenia again or venesection since Nov. 2019.
Yes, the aim is to keep a weekly injection at 135mcg for as long as possible, and as long as the quality of life is good. We’ll check the JAK2 AB in 4 months to see if it follows the same trajectory. It should! 🤞🏻
I see Dr V here in Houston and I can tell you from recent experience that he is insistent on a phlebotomy when I get even slightly above hct 45. I tried to delay a phlebotomy when I was at 46 last week and he was against waiting. Also one of the reasons he recommend Besremi in my case at age 55 with low risks was he said if you are relying on phlebotomy only you spend too much time above 45 hct than you should because you are relying on periodic labs and phlebotomy only once you are significantly above 45z I don’t completely understand his reasoning on the subject but he strongly believes that a pv patient should not stay above 45 hct for any length of time and since he is the expert I take his advice. I think the reasoning is something along the lines of a non pv person above hct 45 is not that big of a deal but for a pv patient the risks are much higher for clot/stroke if hct is even slightly elevated That’s my take on it anyway.
Dr V is close to the reports right in this thread on HCT risk so his words here to a real patient are worth our attn. It is strange that 45 is treated like an on-off switch, but he's presumably using solid data for this advice.
He's got you on substantial doses at 300, I assume to keep the HCT in that strict limit.
That’s my assumption too but the problem I have is that as long as I am still having phlebotomies while on Besremi it’s hard to quantify how much of the hct control is from the phlebotomy versus Besremi. Good news is that phlebotomies are less frequent than before Besremi so iron counts are presumably better and platelets are objectively better per labs. My platelets were crazy high at 1500 after five years of phlebotomies every six weeks and now their down to 800. Need to get lower but still a dramatic improvement.
it has been shown that the thrombotic risk increases EXPONENTIALLY as the Hct rinse above 45 for men , there are plenty of graphs online about that. The main reason of death in MPN is thrombosis so it’s a no brainier that a man should have Hct well under 45 and women 43 and if they are over that a venisection or venisections should be obtained asap, any Haem will confirm that.
I don't recall the exponential effect in reports I've seen. But the "tight" or "strict" term Dr V has used is consistent with that idea. And here again is a Dr V comment:
The curve is most definitely exponential, I think it was Barbui and his associates in Italy that put it together, if I see it I will post, I can’t remember when exactly it was but it may have been since Dr V did that attached vid which was in 2016
With Barbui in a search, this came up that gives more context:
<< In the low- and high-hematocrit groups, the median hematocrit level was maintained at 44.4 percent and 47.5 percent, respectively,...>>
Surprisingly high in the "low" group, (happens to be my exact HCT from last CBC on low dose Bes) and these numbers are indeed close together. Good evidence of the sensitivity. I think there is more follow up later than this 2013 report that may give more detail you refer to.
I am on Besremi and for what it is worth my mpn doc insists that I get a phlebotomy if my hct goes anywhere above 45. I recently wanted to avoid a phlebotomy when my hct crept above 45 to 46 after 3 months of Besremi. I had the same reasoning you stated above that slightly above is not a big deal, but he was insistent that I remain under 45 due to clot risks so I had the phlebotomy. You raise an interesting point and I plan to ask my doc why he is so concerned about a hct that is only slightly elevated. If I find out I will post. I really want to delay phlebotomy whenever possible since I feel so much better when my iron levels increase in between phlebotomies. Best of luck!
Thanks for the feedback. My HCT was 62 at initial disease presentation four years ago; and it could have been that high for many months since I used to only have yearly check-up back then. I was asymptomatic even at 62 HCT reading. Hence, I have that question related to frequency of Phlebotomy versus near-normal Hematocrit reading. However, I am not exactly advocating to take a risk and not have phlebotomy or cytoreduction at HCT over 45. Just thinking because we all deal with statistical numbers and the applicability of these numbers/parameters, while well research, tend to have different effects or symptoms for individuals.
IMO, he’s concerned about a very slightly raised hematocrit for medico-legal reasons only. He doesn’t want to be hold accountable for a thrombotic event.
HCT control to the point of being phlebotomy free cannot be rushed with any form or dose of interferon. 3-5 years of treatment may be required and a number of PV patients with aggressive disease never become completely phlebotomy free. However, there is one way to often cut the time of becoming phebotomy free in half, but it's unaffordable for most patients; i.e. take Pegasys or Besremi together with Jakafi.
My Dr said similar as you say here, HCT has a lagging effect on INF.
I would like to combine low doses of Rux/INF, my Dr is not open to that. But might that just pull WBC even lower for those who are already not balanced there? I know we don't have clear answers for these sort of questions.
I just try things out, with permission. I have excellent communication with my body. I feel and notice changes immediately. Something to think about. But safety first. 😉
I don’t understand some abbreviations. PB? QOL?Usually, when our bloods are just a tad out of the normal range, that’s not a problem.
Like many of us on the forum, we are not in GB or the States/Canada. The ranges for blood test differ. Here in Austria, different labs even use different counting systems.
I am among the guilty using these shorthands. PB is one way to abbreviate phlebotomy (venesection) . QoL is quality of life, a real big one for so many of us.
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