Besremi - CBC after the 5th dose kept at 200 mcg

[Pat032018]

Just want to share my Besremi experience for anything to be learned from it.

Above picture shows my CBC after the 5th dose (results of 4/16/2022; 1st dose results was 2/18/2022).

HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropeitin; I am now 64 years old; Only phlebotomy and aspirin for 4 years until Besremi in Feb 2022. Most concerning before Besremi was platelets of 1100. Allele Burden was 70% before Besremi. Currently, other than low-dose aspirin, Centrum 50+ men's vitamins, and garlic suppement; I have no other medication. I have been wearing CPAP mask for sleep apnea since year 2000.

BESREMI EXPERIENCE: Very good so far. After the the 5th dose of 200 mcg (1st at 100, 2nd and 3rd at150, and 4th and 5th at 200), Platelets down to 463, WBC and HGB in normal range coming from a high number. HCT was on a downtrend normal at 43.3. Pruritus had been absent since the 2nd dose of Besremi.

BESREMI SIDE EFFECTS: First 48 hours after injection, a flu-like symptoms but manageable and no medication required. Also, a couple of extra toilet trips/per day for vowel movement more than usual (nothing serious). These are minor burden compared to the hematological changes that I thought were all for the better.

OTHER CONCERNS: Low MCH, MCHC and MCV. My research points to low iron stores as the reason for these non-normal values.

[hunter5582]

That is really good news. It sounds like you are on your way to a complete hematologic response. And you are tolerating the Besremi well. Very good news.

I expect you are right about the Low MCH, MCHC and MCV. This is the norm due to the phlebotomy-induced iron deficiency. It will come back up on its own over time, but it takes time for you body to restore depleted iron levels. Iron deficiency also causes reactive thrombocytosis. It bumped up my PLT +200K when I was doing phlebotomies. You may well see the thrombocytosis reduced when your iron levels restore.

Please do keep us in the loop about how things are going with the Besremi. We are stronger and better informed together,

[Pat032018 in reply to hunter5582]

Thanks for the feedback Hunter. I am cautiously optimistic, but thankful that the CBC numbers are trending toward normal values. Thankful to God always.

To answer your question, I have no obvious or unmanageable side effects. I have complained that my energy level after the first 48 hours, after Besremi injection, have not been to the level I know my body when it is at 100% state - but I can still exercise at the state if I feel like it. I make more trips to the bathroom (for vovel movement) especially when I am under pressure from work - but nothing to be concerned about.

Thank you for letting me about reactive thrombocytosis as I do not know about t. It made look up the web for what it means to me.

I plan on keeping my dose for 200 mcg for a while until my body gets used to it because the first few days after injection seem not the ideal feeling - but maybe this is my new normal. I am not sure if my hematologist, who is a very good listener and an excellent consultant, will agree to my plan to keep it at 200 mcg for a while -as he had suggested before that I follow the manufacturer recommended 50 mcg dose increasing scheme.

Is PTT Partial thromboplastin time? I do not know about it but will keep it in mind for further Google lookup.

Thanks again Hunter.

[hunter5582 in reply to Pat032018]

Typo! PTT is was supposed to be PLT, which went up ny 200K when I was very iron deficient. You are right about what PTT is. Another important number. It can also go up when you have too many platelets. Mine always did. Another one of the odd things with MPNs, thrombocytosis puts us at risk for both thrombosis and hemorrhage.

[Pat032018 in reply to hunter5582]

Thanks Hunter for the clarification. I do not know many things and I need to look them up.

[hunter5582 in reply to Pat032018]

That is pretty much where we all start off. We learn more as we keep looking things up and share information. It really does help to learn the terminology. We can communicate more effectively with each other and with providers in the MPN world.

All the best.

[Pat032018 in reply to hunter5582]

I need to learn about the elements/parameters being monitored by the CBC testing and how it relates to PV and, in general, to my physical condition so that I would be able to communicate to my doctor for any type of action or treatment.

Thanks for your comments.

[hunter5582 in reply to Pat032018]

Here is an excellent video about your CBC that is a good starting point.

youtube.com/watch?v=Xj_yE1p...(Not working as expected?)

[Pat032018 in reply to hunter5582]

Thank you very much Hunter! That was an excellent presentation for understanding the components being tested when bloods are drawn for CBC. I plan on another or more viewings of it until it sinks into my memory. You are very helpful by sharing this type of presentation.

[Hopetohelp]

Great news and very impressed on how it has controlled your platelets

[Pat032018 in reply to Hopetohelp]

Thanks for viewing and your comments.

[Wyebird]

Brilliant news regarding platelets, I do hope good news continues.

[Pat032018 in reply to Wyebird]

Thanks for the comments and your best wishes.

[mfh7]

Your situation sounds very similar to mine. I have essentially the same pv background and also started Besremi in February 2022 as my first drug after 5 years of phlebotomy only. I am now on my 6 dose at 300 mcgs and hct has stayed in normal range for now. Without Besremi I would definitely have needed phlebotomy by now. Next dose we are backing down to 250 to see if that gives the same favorable results. My platelets were at 1500 when I started Besremi and now are 800 and declining. I have the same low iron issues as you from phlebotomy issues I guess but that is slowly improving. Please continue your informative posts and I will try to do the same. Best of luck.

[Pat032018 in reply to mfh7]

Thanks for the comments, I had in-person consultation with my hematologist last Friday; and he suggested that I keep my Besremi dose at current level of 200 (actually more like 225) mcg for a while as he thought that the CBC numbers seem to be trending to normal at this level. He does not think that I am missing out on the potential effects of improving my JAK2 mutation frequency/allele burden even at level lower than the 500 (max) as mentioned by Pharma Essentia. So, I will stay at 200 to 250 range for a long time.

For four years prior to Besremi, my only treatment , which was phlebotomy, averaged 6-month frequency. Back then, my ferritin iron was low fluctuating from 8 to 10. But now it is at 16, and the hematologist and I think that it will eventually trend to higher or normal level.

Good luck to all of us!

[mfh7]

Sounds like you are doing great. I was getting phlebotomies at least once every 2 months before Besremi so my iron was even more depleted. I feel much better now and My doc now says that since we have hct under control for now I can actually take iron to help iron restore. I am curious as to what your doc might think about this if you are comfortable with asking and sharing. Before besremi any suggestion of taking iron was strictly not recommended as I’m sure you know because it tends to increase hct.

[Pat032018]

My hematologist gave me mixed signals about iron; but I think I get his point. In March, I was complaining about low iron/ferritin; at that time, he said I can "optionally" take iron pill every other day - and then I responded that I do not want iron pill but I will try to increase my consumption of iron-rich food - and that deliberate action of consuming iron-rich foods had actually raised my ferritin form 10 to 16 - so last Friday, he said I do not need iron pill. He mentioned that iron will slowly but surely go up (in months) if I continue eating foods containing lots of iron.

Hunter5582 has a good posting for iron levels.

Good luck and God Bless all of us!