This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis, a quite high allele burden (well over 50%), and an abnormal karyotype (2 of out 10).
After that BMB in April 2022, the doctor said, "We need to get you on an interferon." We started the Besremi in June 2022, and I steadily moved the dose up to the max of 500 mcg every two weeks. Fortunately, I've tolerated it well, despite going through a phase of moodiness and irritability, a slight bit of nausea (which could be in my head), and some mild rashes.
The follow-up BMB was in June 2023. In addition to having my blood counts now under control, the fibrosity level is the same, the allele burden went down 9% (still over 50, but on the right track), and the abnormal karyotype is completely gone. (The doctor was most excited about the karyotype, because that's apparently correlated with disease progression and severity.) My spleen is also a little smaller, and the post-shower itchiness has gone away almost completely. The other change (and this may not mean anything or be connected to the drug) is that the LDH is in the normal range. It has steadily decreased over the past year.
It took a while for the hematocrit to be under control, and I had about three phlebotomies during that 12 month period. A few things are out of whack, including WBCs and platelets being a bit low; but the counts are more normal than they've been in a very long time.
I kept reporting to the doctor that I felt really good over the past 4-5 months, but I was still super anxious about whether the disease had progressed given my less than stellar numbers. I know the future holds no guarantees, but I feel like the Besremi is starting to do its job. I've been working to put my fears about progression in the back of my head instead of always in the front -- regardless of what happens in the future.
I've learned so much from this community. I think of you all often and hope you're doing well on this MPN journey.
Written by
GardNerd
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Great news! I'm so glad you were able to start Besremi and things are moving in the right direction for you. 👍 I have been on Besremi for 17 months. I haven't done a recent BMB as there wasn't anything concerning prior, but my allele eburden was 56%. I too have had several phlebotomies to control my HCT, but increasing my dose to 180 last month seemed to finally take hold as my HCT went down which is almost never does. Also my allele dropped to 36%.
It sounds like you’re on a great path! It does take a while to get the HCT under control. Your allele burden reduction is awesome! I hope the journey continues going well for you.
great news , Bes or Peg usually become more effective as time goes on so it’s reasonable to think maybe the best is yet to come. Anxiety is always tricky, but it looks like with the available drugs you are doing the best you can ie there’s nothing else you can do MPN wise so pat yourself on the back and don’t waste valuable life time worrying about something when you are already doing all you can. Of easier said than done to stop worrying but we have to try.
Thank you for those wise words on anxiety. It took me 61 years of life to start paying attention to mindfulness and managing worry and anxiety. I guess it’s never too late!
I am happy to hear your positive results. May I ask your dosage. I started early January at 100 mcg and then moved to 150mcg. Team talked of taking me back down to 100mcg. I am ET with PreFibrotic Myleofibrosis. I have had low WBC. But my platelets and now in normal range. Thanks for posting. Christy 😊
Hi, Christy. I started at 100 mcg last June, and the doctor increased me by 50 mcg every two weeks. I think there was one week where I didn’t feel comfortable increasing, so I didn’t. By mid-October I was at 500, and I’ve been there ever since. The moodiness and irritability was the most challenging side effect for me, but that subsided with some time.
Very good news. The improved progression free survival we can see with Besremi is very promising. It sounds like you are on a good course of treatment for your MPN variant.
thank you so much for posting and it’s wonderful to hear your positive story. I have been in Besremi since January this year without any major side effects and still hoping for good results. Your story is very encouraging. Like you I depend on this forum for information, expertise, and support. Best wishes for continued progress!
Great news! Thank you for posting. I have been on Peg (for ET Jak2+) for a little over a year now and my MPN specialist and I are thinking about repeating a BMB in another 6 months to see if there is any change (bloodwork has moved in the right direction with platelets at 488 and WBC and all other bloods in normal range). I too had a fairly high allele burden (for ET at 40%) and also there was a question in my original diagnosis if we were dealing with ET or pre-MF..so hoping the interferon is doing its work not just at the hematological level but molecularly as well!
I sure hope your interferon is doing its work, too. Getting the repeat BMB and then waiting for the results was stressful, but worth it. Best of luck to you!
Congratulations on doing so great with the maximum dose - you are a fighter🤼♂️. It is wonderful to hear you describe your journey and the wonderful attention from your Doctor. Thank you for posting of your struggles and your successes. 🍾🥂 🍻❤️
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