Besremi working well- 150 mcg every month instea... - MPN Voice

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Besremi working well- 150 mcg every month instead of bi-weekly

Pat032018 profile image
37 Replies

So, my WBC, RBC, HCT, and hemoglobin went down below the range for a couple of months. Instead of lowering the dose, the haematologist advised me to keep the 150 mcg dose but inject it every month instead of bi-weekly. My latest CBC and CMP show that all blood counts/parameters except hemoglobin were back to normal. Hemoglobin is 13.0 and just below the normal range per Quest Lab from 13.2 to 17.1.

The monthly schedule is consistent with the manufacturer's study that Besremi be administered monthly once the blood counts stabilize.

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Pat032018
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37 Replies
hunter5582 profile image
hunter5582

Great news! Will you be rechecking your JAK2 allele burden? I have seen a significant decrease in mine on 150mcg Besremi.

Pat032018 profile image
Pat032018 in reply tohunter5582

I will have to request that from my haem on my next visit.

SoledadBarcelona profile image
SoledadBarcelona in reply tohunter5582

When can we recheck the genes? Has PharmaEssentia any paper or recomendation about it? Thanks

hunter5582 profile image
hunter5582 in reply toSoledadBarcelona

I have not seen any recommendation from PharmaEssentia on when to recheck allele burden. My MPN Specialist checked at 18 months since it is known that some do respond that quickly. We will recheck 12 month from that date. I am clearly having a robust response, so it is worth checking annually at this point.

My doc does believe that allele burden is a valid indicator of MPn status and worth checking. I agree. Not everyone does agree, however.

Pat032018 profile image
Pat032018 in reply tohunter5582

As long as my insurance will cover it which probably is yearly, then I would like my allele burden to be checked.

hunter5582 profile image
hunter5582 in reply toPat032018

I have had no issues with insurance authorization for checking allele burden annually.

Elizka profile image
Elizka in reply tohunter5582

I check quarterly

EPguy profile image
EPguy

That's great your Dr agreed to the longer dosing. Many of us here like the idea of minimum effective dose. I regret not insisting on that.

Pat032018 profile image
Pat032018 in reply toEPguy

I thought I saw within PharmaEssentia website that monthly dosing is recommended once the blood counts stabilize.

EPguy profile image
EPguy in reply toPat032018

That is correct. I think there is also a min time like a year, although that seems to be less clear. I was stable at CHR almost from the start but Dr kept me on more than required which likely was part reason for my bad outcome.

SoledadBarcelona profile image
SoledadBarcelona in reply toEPguy

No, it is fine, low dosis work well. It depends on each personal disease.

givingITMybest profile image
givingITMybest

cheers!!! I started Besremi 6 weeks ago, but blood work has not settled yet. Your results are promising.

Pat032018 profile image
Pat032018 in reply togivingITMybest

When I started Besremi 17 months ago and into the first couple of months, the improvement in WBC, RBC, HCT, and HGB were all significant even though they were still outside of the normal range. It probably took 5 months until all blood counts went inside the normal range.

GardNerd profile image
GardNerd

this is great to see! Great news!

Pat032018 profile image
Pat032018 in reply toGardNerd

Thanks for the comment!

How often do your doctor check the genes? And, all panel or only JAK2V617F? Whete can I find this study, please? Ave the Besremi's lab studys about when we have to check the genes? Interested. Thanks

Pat032018 profile image
Pat032018 in reply toSoledadBarcelona

My doctor will only recommend an allele burden test when my insurance will cover the cost- maybe yearly.

FG251 profile image
FG251

Excellent! Do you (or anyone else) know if there is a similar protocol for Pegasys? I’ve been stable for well over a year, yet I’m still injecting a low dose weekly.

Pat032018 profile image
Pat032018 in reply toFG251

Sorry, I do not know Pegasys neither HU. Besremi was the first medication I have since being diagnosed four years earlier.

Congrats! I guess that is one of the benefit of Besremi, longer effect, and highly flexible dosing option which allows Dr. to personalize desirable treatments.

Pat032018 profile image
Pat032018 in reply toLillysue19850705

Thanks LillySue!

KLCTJC profile image
KLCTJC

that is great news!!!! Hoping that happens for all of us on Besremi!!!!!

Jamesxyz profile image
Jamesxyz

That's great news. Did you have any liver issues ?

Pat032018 profile image
Pat032018 in reply toJamesxyz

I do not have liver issues at the moment even though there was one blood test when my ALT and AST were high. It must have been a one-off since the following month's test was good.

Teachme85 profile image
Teachme85 in reply toPat032018

such wonderful news. I start my first dose of Besremi tomorrow. I’ve been on hydroxyurea the past 3 months with no adverse side effects. Hoping the same holds true for me Besremi.

Pat032018 profile image
Pat032018 in reply toTeachme85

I hope Besremi works well for you as it has for many people in this group. Best wishes!

Ovidess profile image
Ovidess in reply toPat032018

Congrats! And thanks for the liver info. I'm on hold from Besremi because the doctor does not want to start me back on it until my enzymes are both in the normal range again. I'm a bit worried for the delay because although my HCT is holding strong during this no drug period, my platelets have just soared up, recently up by 50% in two weeks. I bet it will take a number of months again to get them under control, if indeed it can be done under 250 mcg, the point at which my blood counts started turning dramatically around. Both my local doc and the Mayo specialist consulted first told me to give up Bes and do HU, but they then gave way and said I could try Bes on low dose. The timing may be tricky for me...

Pat032018 profile image
Pat032018 in reply toOvidess

Thanks for the congrats! I do not have comments for your Besremi usage, Besremi vs. HU, and low dose vs higher dose Bes because you have good consultants from Mayo. My AST and ALT test went up in one single test only but came back normal after the next test a month later - and I did not even do anything special (that brought back my AST and ALT to normal). Hope your liver enzymes returns to normal levels soon!

MAP44 profile image
MAP44

Amazing results for you!!!🎉🥂🍾

Congratulations, you my friend are a success story! The drugs are working as they should. We are all delighted and excited for you. Please keep us posted on your continued success with your treatment.

I hope you feel like a $1,000,000.

❤️❤️😎

Pat032018 profile image
Pat032018 in reply toMAP44

It is working wonderfully. My son used the word "a miracle drug". Thanks for the congratulatory remarks. In addition to the medication, I daily thank God for many things in my life! I am now 65 and still physically active - without diet and other restrictions.

mhos61 profile image
mhos61 in reply toPat032018

Always nice to hear success stories. Long may it continue for you.

Pat032018 profile image
Pat032018 in reply tomhos61

Thank you mhos61

Elizka profile image
Elizka

I'm so happy to hear how successful your treatment has gone!

Pat032018 profile image
Pat032018 in reply toElizka

Thnak you Elizka

Wyebird profile image
Wyebird

fab news.

Pat032018 profile image
Pat032018

Thanks Wyebird

Pat032018 profile image
Pat032018 in reply toPat032018

Wishing everyone good results for the treatment they're having!

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