Besremi - after the 6th 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 6th dose (results of 4/28/2022; 1st dose results was 2/18/2022).

HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; 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 plus raw 2 cloves of crushed garlic every other day; 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 6th dose of 200 mcg (1st at 100, 2nd and 3rd at150, and 4th, 5th, and 6th at 200), Platelets down to 439, WBC and HGB in normal range coming from a high number. HCT was on a downtrend normal at 44. 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.

[Pat032018]

Still low iron profile; but have already improved.

Iron/Ferritin profile after the 6th dose

[hunter5582]

Sounds like you are on a good track with the Besremi. You are right that your iron levels are low and it likely is affecting the erythrocyte numbers. You can expect the iron levels to gradually come up over time, but it can take over a year for that to happen. Iron is not easily absorbed purely from diet. As iron levels come up, your body will want to make more red blood cells. It may require dose titration. Time will tell on that.

Thanks for posting you information and experience. It is interesting and informative for us to be able to compare experiences.

[Pat032018 in reply to hunter5582]

Thanks Hunter for your comments especially those about iron. My RBC is still relatively high at 6.3 yet the iron panel is on the low side. I will have to monitor; and maybe Besremi at 200 mcg or at a higher dose would be helpful to control RBC while I intend to consume more iron-rich foods

[EPguy]

Great results. I'm on shot #5 at 110mcg.

Are you all done with the phlebotomies?

I saw your older post that your Dr said you have "MPN" rather than a certain category. My specialist said the same. My Dx is PV but I have ET features.

[Pat032018 in reply to EPguy]

Hi EPGuy,

I have not done phlebotomy since 6 months ago (approx) and does not foresse one in the coming 2 months.

My BMB test results 2 -1/2 years ago mentioned that my disease was demonstrating the symptoms of ET (more than a PV) due to to high platelets but I was managing my RBC quite well back then by avoiding iron-rich foods. My hematologist back then was saying that there could be overlaps between PV and ET in an MPN situation , and that was consistent with an older youtube video I saw where Dr.Verstovsek of MD Anderson (Austin, TX) mentioned of overlap or potential evolution of the disease from one to the other (PV to ET, or ET to PV as examples).

I think mine is definitely a PV, as I really had very low erythropoietin in adddtion to being JAK2+ and had high RBC at the presentation of the disease. Even after the 6th dose of Besremi as of last week, the RBC is still at 6.3 slightly higher than the upper limit in the normal range.

Thanks for asking. Hope all is well with you!

[EPguy in reply to Pat032018]

That's great for no more PLB for now.

The ET part of my Dx was from the details of the marrow histology (this sort of thing: "Bone marrow showed hypercellular marrow with increased megakaryocytes." )

I think the PV Dx was from blood counts.

I've read that eventually our Dxs may be primarily gene based rather than category as they figure out more what all the genetics mean. This is a trend for many cancers as I understand it.

I see your concerns about MC-x blood counts. Mine are also usually out of range, but high, both on HU and Bes. My Dr assures me these high values are no problem and as Hunter has said re HU, it is a sign the med is working. Have you asked your Dr's opinion about the low values?

All is sort of decent at the moment, several days in a row without a real bad one. I'll post more on it if I can get a week out of it. Thanks also for asking.

[Pat032018 in reply to EPguy]

No, I have not asked my hematologist about my low values for MC-x; but I will in my next consultation (hoping, I will take notes or prepare so I will not forget).

Wishing all the best for you!

[EPguy in reply to Pat032018]

Totally agree on the notes, if it's not there it doesn't happen for me. I usually have a long list.