Hi all ! Anyone on 500 mcg of Besremi and feeling terrible bone and muscle pain?? Especially at night??
I also recently had a very bad gum infection in my mouth and had to have a wisdom tooth removed after two rounds of antibiotics, didn’t clear it.
I feel so horrible on this medicine. Just wondering if it’s just me.
I am only on 150mcg Besremi, which has been enough to keep me at or near complete hematologic remission. Adverse effects have been minimal, some itching/rashes and mild leukopenia. I am beginning to see an uptick in liver function tests which is a concern.
Adverse effects are dose dependant. Not sure why you need the max dose of Besremi. Perhaps a discussion with your care team about titration is in order.
Hope you get it sorted soon.
I see in your prior posts that your dose is being set for PLT control. How is your HCT and WBC? Last you noted a quite low HCT. Maybe a lower dose is ok to help your tolerance, if PLT is less strict? Has Dr discussed this?
Like Hunter I'm at my max dose (140) with WBC getting too low to go further.
My numbers have been holding at very good levels for about a year on a dose of 50mcg/2 weeks. I realize this is a very low dose and not everyone does well at this level, but 500mcg seems like a really high dose and is most likely causing your adverse reactions. Please discuss with your care team.
my mpn specialist has me on this dose and I am still taking nine hydroxyureas a week as he says he is waiting for my platelets to come down a little bit further. Last weeks lab work they are at 474. My hct is 35 and my wbc is 6.8. I never felt this Way on four hydroxyureas a day, but he wants me to hang in there and it’s been very difficult living in pain like this every day.
Has you Dr discussed any trials? For example maybe you can qualify for the the Bomedemstat trial. Many patients (but not all) are seeing good results there.
Is your doctor an MPN specialist? That’s a lot of medicine for anyone to take.
Hope you feel better very soon. The meds are working but the dose seems cracy high for your current blood numbers.
I’m at 500 mcg and haven’t experienced the muscle and bone pain. I can imagine how frustrating that is! I went up gradually and only as tolerated. As others have said, you may not need to be on such a high dose to get blood counts in order. Did he start you at a high dose or allow you to get to a tolerable dose gradually? Best of luck to you.
yes I’m under the care of Dr Michael Mauro , MPN specialist at Memorial Sloan Kettering in NY/NJ. He’s been monitoring me every two weeks since January when I started the Besremi . I started at 50 mcg and was doing 4 hydroxyureas a day and slowly tapering off. He doesn’t want me off completely yet. I’m following his orders
I am now on 500 mcgs. Doc slowly increased dosage to try to get a better response in terms of hct. No known change in side effects. Still having itching and mild stomach discomfort but don’t know if stomach problems are related. I still require a phlebotomy once every two months which is why we are trying the dose increases. Been on Besremi for 11 months. Platelets have responded well and decreased dramatically. I still feel better than I did before Besremi when I was requiring monthly pbs and hoping the hematological response kicks in soon. I have read that many patients take a year or more to get the full beneficial effects of Besremi.
That does seem like a lot of medication. Most of us on Besremi in this group take much less. My HEM takes the approach that the higher the does the potential for unwelcome side effects.
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