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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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.
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.
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.
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
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.
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.
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.
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.
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...
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!
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.
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.
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