I have been on Besremi for 2 years now. May will be 2 years from my last phlebotomy. Labs this week were solid and stable. WBCs 2.5, hct 41, PLT 122, neutrophils 1.8, lymphocytes 0.5. Pretty much identical to December except a little point here or there. I did my labs day before my shot so I think that is why my hct was 41, it was like 39 in December. I am on 175mcg every other week. All other labs WNL, I have expressed on here I don’t like my creatinine, but it is still normal and beggars can’t be choosers!🤣. Liver, lipids, glucose and thyroid all looked great. So, my biggest question is now what, do I just keep going or reduce to once a month, thoughts? I see local oncologist in 2 weeks and I faxed the labs so he will already have them. This is great news! This drug has changed my life! Thanks for all the support. Happy Valentine’s 💌💌
Besremi update❤️: I have been on Besremi for... - MPN Voice
Besremi update❤️
I don’t have enough experience to advise but really pleased for you with those results . Thanks for sharing your good news.
That is good news. Great that you have such a good response at a low dose. In this situation I would continue with the current dosing regimen. Bearing in mind that the half-life of Besremi is 7 days, your HCT would rise and fall even more with monthly dosing than it does with biweekly dosing. Another option would be to drop the dose to 150 mcg if you want to see how less Besremi works for you. Of course, you can always try the monthly dosing regimen and see how you respond. Sometimes trying is the only way we learn.
All the best.
Agreed, I think for now. I feel like staying the course is the way to go. Everything thing is looking good. And seem to have good handle on the thyroid now. All other things seem to be stable or improved. But will see what he says. I think no one is going to want to rock the boat!
What great news! I would probably agree with … if it ain’t broke don’t fix it - at least for now. Glad to hear your thyroid is behaving too. Mine spiked last fall and I got chronic hives so had to give up on Besremi. You were very helpful with the hives back then, thank you. I’m now on RUX and hives are almost gone plus thyroid is back to where it was - still hypo but stable. I’m curious if you have had a VAF test after 2 years? You are one of the lucky ones with successful low dose Besremi! Wishing you continued great results!
I haven’t had a VAF test. To be honest not sure I have ever had one. I saw Dr Verstovsek until he left to run a drug company. He never mentioned it but did a huge panel my first visit and called me personally afterwards and told me I only had one other mutation and he said it was nothing and nothing to monitor. It was a panel only he does, and exclusive to MDA. So who knows what was in it!🤣. Thyroid holding for now. Had to make some adjustments but I finally feel this is the right dose. Tsh has been under 2.5 last two times! And haven’t changed Besremi dose since August.
I am so glad I helped you! Always so happy to help! Glad Rux has a working out. Jaks are showing up everywhere! Rux is different but still crazy to see the newer Jaks for all kinds of stuff coming out! Thanks for the well wishes, wishing you the same!
The Bes is working quite well for you. Your numbers are generally quite low, suggesting room to lighten up. For obvious reasons I favor the lowest effective dose. Do you have HCT results over time? Any trends? How much experience do your Drs have with IFN?
If you did reduce, one option as Hunter says is a lower amount at the same schedule to reduce possible peaks, valleys. All worth asking your oncologist.
My local oncologist doesn’t have much, but he is good at asking experts for help. We have known each other long before I got diagnosed. So I trust him. MDA says just keep going but I don’t know if NP asked the doc, would like her opinion too. My hct was 39 8/24, 36.(something) in October, 38 or 39 in December, 41 February. But this time I checked it the day before my shot. I think that is why it went up, but has been mostly 38-40 the last year. Highest 42, I think. Been a while since it was that high. I think best day to get labs is a few days before my shot. Will see what he says in 2 weeks.
my 2 cents is it seems to be going very well so leave it as it is, as in if it ain’t broken no point in trying to fix it , congratulations
❤️ I'm so happy for you a d to hear that overall! I've just recently started Besremi (two weeks ago) just took my 2nd dose. At last weeks oncology visit my numbers looked better than they have in the year on HU. I've been in a zone of...could this really be making me feel this much better already? Is it just because I've been able to discontinue HU? I wish you the best in your continued journey. Please kept posting we do all need each other.
I felt that way too! I think it absolutely could be making you feel better! And who cares if it is the med or placebo! I just know I have felt better in the last 2 years! Wishing you the best!!!❤️
I love the handle you chose for this site. I second that emotion. Best always.
Besremi Side Effects
