increasing HCT despite Besremi

[JeanieRN]

For those of you on Besremi, how long did it take to lower your Hct? I have been on it for 2.5 months and my Hct has gone from 41 to 45. I clotted off my liver last summer (Budd-Chairi Syndrome) so my rising Hct is concerning. I am also on Coumadin. My MPN doctor increased my Besremi dose from 50 to 75 mcg a month ago. I take it every 2 weeks. We are going slow with the increased dose because of my autoimmune disorders. He did order a 500 cc phlebotomy to be done tomorrow. I have never had this done before. Any advise is appreciated. Thank you!

[hunter5582]

Besremi does take time to get to a therapeutic dose. You are still at a very low dose. I started at 100mcg then went to 150mcg. Note that I was on Pegasys prior to starting Besremi. My HCT had gone above 45% right before switching.

The short version is that eliminating the phlebotomies is allowing my iron levels to come back up. The whole point of phlebotomies is to induce iron deficiency to control the erythrocytosis. Unfortunately, the iron deficiency can also have adverse effects, which for me included fatigue and reactive thrombocytosis (PLT+200K). I have steadily increased my Besremi dose rather than return to phlebotomies. Providing I am able to tolerate a therapeutic dose of Besremi, that will continue to be my plan.

Given that you have not ever had a therapeutic phlebotomy, it certainly makes sense given what you describe. The occasional phlebotomy is no big deal. it is the same as donating blood. It can drop your iron levels while giving the Besremi time to do its work. I expect you will need a higher dose but meanwhile you do need to control the erythrocytosis. In regards to the phlebotomy, the main thing is to be well hydrated before and after. Your body will need to replace the blood lost with plasma.

Given your history, assertive risk reduction is certainly indicated. Do note that most of us are on much higher doses of Besremi, which has a max dose of 500mcg. None of us on the forum have needed that high of a dose. Suggest discussing a dose titration schedule with your MPN doc. The norm is to incrementally increase the dose until a therapeutic level is reached, monitoring for adverse effects/tolerance.

All the best. please do let us know how you get on.

[JeanieRN in reply to hunter5582]

Hi Hunter,

Thank you for your quick reply as this is causing me some anxiety. I spent 7 weeks in the hospital last year due to my Budd Chairi Syndrome with multiple complications, so a rising Hct makes me very nervous. I also had a DVT 13 years ago and was dx with APLAS as well.

My MPN specialist did email me today that he is increasing my Besremi to 100 mcg every 2 weeks. I am still unclear as to how iron levels play such a big role in PCV. I attached my recent blood work. The top number is my blood level and the other numbers are the normal ranges. I copied and pasted it, but it didn’t come out the way it should have looked. I really value your feedback as you are very knowledgeable. Thank you for taking the time to explain things in a way I can understand!

Sincerely,

Jeanie

Bright

[hunter5582 in reply to JeanieRN]

The short version is that your body needs iron to make RBCs. The JAK2 mutation puts your erythropoiesis into overdrive, making RBCs even when they are not needed. This scarfs up the available iron. It is very common for people with PV to be already iron deficient because of this. Phlebotomies further the deplete the iron levels, depriving the body of the iron needed to make RBCs. While this can help to control erythrocytosis, chronic iron deficiency can have adverse effects even when it does not cause anemia,

Here is a bit of information about PV and iron metabolism.

nature.com/articles/s41375-...

mdalert.com/ms/hematology/a...

pubmed.ncbi.nlm.nih.gov/281....

Here is a bit of info on the iron tests

• Serum iron. This test measures the amount of iron in your blood.

• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.

• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.

• Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.

webmd.com/a-to-z-guides/iro...

Here is a nice training video on Iron Physiology. While not about PV, it helps to explain what all those iron panel number mean.

youtube.com/watch?v=ahCy97F...(Not working as expected?)

It sounds like your MPN Doc on the right path to move ahead with a phlebotomy and also increase your dose of Besremi. I would not be at all surprised if you need to increase the dose some more. Even 100mcg is quite low. I am currently at 150mcg and have achieved Complete Hematologic Response (CHR). My goal is to maintain CHR without needing phlebotomy. I am currently doing this.

All the best.

[JeanieRN in reply to hunter5582]

Thank you for all this information! This is very helpful. That is great news that you have achieved CHR! How long have you been on Besremi?

[hunter5582 in reply to JeanieRN]

I was on PEG from 05/21 to 02/22. Beremi from 02/22 until now.

[Wyebird in reply to hunter5582]

Thanks Hunter I’m going to look up all my blood test results now and try and find out why I’m anaemia despite having quite high ferritin levels

[ainslie]

I cant say about Bes but Pegasys can take months or up to 2 years to be phleb free, so for some patience is needed, maybe wise to consider some phleb in the meantime, even small ones

[EPguy]

I see you were briefly on PEG at 45/week, but had tolerance problems with it. Did PEG control your HCT?

[JeanieRN in reply to EPguy]

Hi! Yes, my Hct was 41-43 on the Pegasys. We switched to Besremi. as I was told that the Besremi was specifically developed for PCV and that was my best option for CHR. I love to hear from others if they achieved CHR on some of the other meds given for PCV. Thanks!

[EPguy in reply to JeanieRN]

You likely would find this post interesting, right on the point of CHR Bes.

The makers of Bes are trialing it for ET also, so they hope it's good for even more conditions.

A couple members have found PEG was either more effective or better tolerated, but most seem to find Bes is preferred, from my recollections. Most likely you'll be happy with it. I'm on Bes and doing ok.

I can add yours to this plot, at 100mcg. I think you're in no-CHR at the moment. But you're right at 45, is that correct? This plot is compared to the Besremi studies where they used less than HCT 45 for CHR for male and female.

healthunlocked.com/mpnvoice...

PointPlot BesDoseCHR

[JeanieRN in reply to EPguy]

Hi, Yes my Hct is 45.0 I am on 75 mcsgs of Besremi, increasing to 100 mcgs this Tuesday. Feel free to add me! Thank you, I will keep you all posted.

[Wyebird]

Hi, I’m afraid I can’t help but Hunter has given you loads of answers. All I can say is that anecdotal as it is my haemoglobin levels went up when having a teaspoon of honey every day down when I didn’t and then up when I went back on it again. I can’t take iron tablets because I have too much iron in my blood.

Good luck