Update Besremi

[KLCTJC]

I just wanted to say Happy Wednesday and Besremi update. I am now down to 175mcg every other week. WBCs came up to 3.0, hct 36.5, PLts 183! Neutrophils up to 2.1, lymphocytes 0.7. Feeling great! Thyroid is under better control and all other labs looked pretty good! I am praying every day for everyone to get good news! Thanks for all the love and support! Sending out all good vibes!❤️❤️❤️

[hunter5582]

Good news! Dosing is critical with Besremi. It looks like you are another example that max-dosing Besremi is not right for everyone. I am in the same situation, with 175mcg being my max dose too.

All the best.

[KLCTJC in reply to hunter5582]

My MD Anderson doc told me this is completely normal on Besremi. She called it the eb and flow of interferon. I just want to know if anyone is on the once a month dosing. I know in the package insert it says once you reach CHR for a year you can reduce it. But doesn’t seem like anyone ever does. I am just going to keep going like this for now and will bring it up again when I see them. All the best to you too

[Ovidess in reply to KLCTJC]

Hi, I'm now on a 50 mcg dose of Besremi once a month. My body reacted pretty rapidly to the medicine, and when my platelets came down to just under 400 and the HCT stabilized, the doctor and I opted to try me at the lowest possible dose. (At around 350 mcg I'd reacted with bad liver enzyme numbers on my first try with Besremi, going up by 50 mcg each week.) I have lots of side effects that may or may not be due to Bes or even PV, but I gave a long list of 'em to the doctor and he agreed to let me try this experiment even though it's been not even a year since I went back onto Bes after the liver episode in 2023. My quality of life has not returned yet, lots of fatigue and malaise, etc, but for these first few months on low dose, my numbers are holding pretty well. So the experiment will continue for the time being.

[EPguy in reply to Ovidess]

Did you feel any improvement during the time you were off Bes? How did your blood counts hold? Fatigue and malaise were my ongoing Bes experience, but I never got to try reduced dosing. I see your prior post on heart troubles. Is that ok lately? There is a recent thread on this risk.

[Ovidess in reply to EPguy]

The summer before this last one was when I was off meds for a few months, working out financial medical issues while my liver recuperated. (I did not feel ill, but the numbers showed the problem.) There were some other serious health problems in the family then, so I honestly can't report well on how I felt that summer. I think that is when I got a CT scan of the abdomen, so I must have been feeling pressure there. CT showed no problems though. Off the drugs, my blood counts did not hold. My platelets rose way up, the HCT too tho not as dramatically. As soon as I went back on Besremi at a steady bimonthly 100 mcg, the HCT stabilized and platelets began to sink to a safer level. I was worried about heart because of feeling weak and sometimes short of breath, but all the tests--stress test, EKG, sleep apnea, etc revealed no serious issues. I still have a slight worry that the medicine may be affecting the heart, but no proof, and it might be that sleep issues (fatigue daily) are stopping me from returning to full or even 3/4 vigor. I'll certainly continue to monitor as best I can, of course. Thanks! I'll have to review those heart trouble postings again....

[GardNerd]

this is great to see!!!!

[Mishie14]

fantastic progress! So good to see you have achieved a solid, stable state. Your dedication to taking control is an inspiration. Thank you for sharing. Stay safe!

[Meatloaf9]

Sounds like good news, congratulations! May I ask what your Hgb level is right now?

Best to you always.

[KLCTJC in reply to Meatloaf9]

My hgb 12.2. Everything other than my wbcs which were 3.0 was normal including the calculated values which I was super excited about.

[Meatloaf9 in reply to KLCTJC]

Thanks for sharing. My Hgb has gone from 14.5 to 13.1 in the last year, we are thinking it is progression and will need a new BMB. I am 74 with PV. Best.

[KLCTJC]

My hemoglobin didn’t change much. Was 12.8 before and now 12.2. But my other numbers did. WBCs, PLTs, neutrophils, and lymphocytes went up which was good. My HCT came down from 38 to 36.5. So I guess in the scheme of things it didn’t really change. I hope your rights itself and praying no progression!!❤️