Besremi - CBC after the 9th dose at 175 mcg (25mcg lower than previous); no CBC test after the 8th dose

[Pat032018]

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

Above picture shows my CBC after the 9th dose (results of 6/23/2022; 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 to excellent results - so far. After the the 9th dose of 175 mcg (1st at 100, 2nd and 3rd at150, and 4th, 5th, 6th , 7th, and 8th at 200 mcg), Platelets down to 371, WBC and HGB in normal range coming from a high number. HCT was 44.6. Pruritus had been absent since the 2nd dose of Besremi, but it is coming back with minor inconveniene only.

BESREMI SIDE EFFECTS: After the 9th dose, first 48 hours after injection, a flu-like symptoms but manageable and no medication required.

OTHER CONCERNS: Low MCH, MCHC and MCV. My research points to low iron stores as the reason for these non-normal values. The CMP results/report all numbers in normal range including ALT which was higher outside the range last month. Iron/Ferritin test show moderately low values for a few (iron) parameters; but trending toward better numbers.

If interested in historical comparison of CBC counts, please see related previous postings.

God Bless and All the best to everyone!

[EPguy]

This is what us and the guys that make Bes want to see, great results.

Was there a specific reason for the 25mcg reduction? I assume just seeking the min effective dose, is that right?

Do you have another AB% test planned? I will ask for one at ~ the 1 year point if my Dr does not order it.

I see your provider has a low range for Lymph at 0.7, mine is 1.18. As Hunter has said, his Dr is ok with 0.5.

I get very minor post shower Pruritus on Bes also, I didn't have it before.

[Pat032018 in reply to EPguy]

The 25mcg reduction was my response to the the higher than normal ALT and AST (liver enzyme) from last month's CMP test. It went back to normal, so it is possible that the ALT/AST number being high was a measurement error or might have been the ibuprofen I took the night when I did fasting (which was not a requirement actually) prior to the early morning blood drawing.

No Allele Burden testing planned. That would be a yearly request.

The Lymph range standard is from the labs.

Pruritus is back but still not at the"irritating" level.

Thanks and all the best for you.

[hunter5582]

This looks pretty good on the whole. Hope the dosing suits you and the AEs stay minimal.

[Pat032018 in reply to hunter5582]

So far, so good and no significant side effects yet (AEs I took it). Best wishes to you Hunter. You have provided insights into MPN more than the two hematologist I've had so far. Thanks again.

[Jamesxyz]

Hi,

Glad to hear you're doing well on besremi.

I was diagnosed with ET 7 years ago, just took baby aspirin.

Last year they said it was PV. I have been on daily Hydrea (500) for about

9 months. I am now 74. Counts are well controlled with Hydrea.

PLT now 400 off a high of 850, HCT 44.

I have been thinking hard about starting besremi. Did you have any liver

issues. My Dr has warned me that frequent liver and thyroid test are

required.

[Pat032018 in reply to Jamesxyz]

Hi James,

Liver issue had been resolved - so far. ALT and AST on the CMP went higher than the upper limit of the range last month, but the following month's test showed normal numbers. I did not know if it was due to a lab measurement error or might have been the ibuprofen I took the night before (where I did fasting even though it was not required).

All the best for you James!

[Jamesxyz in reply to Pat032018]

Hi Pat, Thanks for your reply. Did your Dr warn you about alcohol consumption with Besremi? I like to have a couple of beers before

dinner. I did not see anything in the besremi warning label about

alcohol consumption.

[Pat032018 in reply to Jamesxyz]

No warnings at all about alcohol or food. He just wanted me to stay at the Besremi dose where I am at which is 175 mcg. I asked him if I will be missing any potential benefits of disease modification by staying at a relatively low dose; and he said "no". My hematologist is known in the MPN field.

[SoledadBarcelona]

I am in the same way with Besremi, 20 times with 100mcgr. Everything in normal range. It started with the 18th doses. No phlebotomies and I will vosit my doctor each two months, no every single month. According to Dr Gisslinger, it has to be so the most time I can support the same dose. I dont know when to check the VAF.

Another question: what do you use to travel and keep Besremi in temperature?

Thanks

[Pat032018 in reply to SoledadBarcelona]

I have not travelled yet with Besremi; but if I do, I would use the styrofoam and ice gel pack that PharmaEssentia provides. I think Hunter5582 had addressed this question, but I do not remember all that he said about travelling with Besremi.

All the best to you.

[GardNerd]

Thanks so much for sharing your experience. I just started Besremi 10 days ago, and it’s great to hear about good results with minimal and/or manageable side effects.

[Pat032018 in reply to GardNerd]

So far so good for me. All the best for you GardNerd.

[mfh7]

Thanks for sharing. I am at a very similar stage in my pv and Besremi journey and have had similar results. Please keep these coming. I am four months into Besremi and currently taking 300 mcg. Have had one PB recently because hct creeped up over 45. Prior to Besremi I had PB every 6 weeks and was exhausted from iron deficiency. Feel better now. Also my platelets were at 1500 and now at 800 and decreasing. Trying to get the correct dose of Besremi which is the main challenge. Skin itching after shower or sweating and occasional stomach discomfort are my only side effects but no biggie. Best of luck!

[Pat032018 in reply to mfh7]

Thank you so much for sharing your pv and Besremi experience. Best wishes for all of us!