Well, after 7 long months on the clinical trial, I am pulling the plug today. There are a variety of reasons. First and foremost is that I can't seem to find the "sweet spot" of bringing my hct and platelets under control without rotten side effects. I have posted before of the strange swellings, rashes, and itchy patches but the latest side effects for me on 45 mg of bomedemstadt is GI upset that OTC drugs do not appear to help with. It may sound not too terribly bad but believe me when I tell you that I have really been suffering. Additionally, it has become too difficult to work full-time and participate in all the appointments, scans, BMB, etc. I am just done. The list of procedures I have had since February would fill this page. I understand that it is research but I have hit a wall if you know what I mean. I feel badly because the bomedemstadt does show significant promise and definitely improved my numbers but as we say, at what cost? I gave it my best. So, my option now is Besremi. I had significant GI upset on Peg as well so I am nervous, but it is my only option at the moment. All of your tales of doing well on Besremi have me hopeful. I remember that someone had posted a conversion chart on this site. Perhaps from Mesa? I was on 45 mcg of Peg weekly. Does anyone know what that would be on Besremi? I am sure my hemo/onco will have this but I am just thinking ahead. Also, if it comes in pre-filled syringes, how do you manage the dosing? Thank you for any info you can provide.
Miriam
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Miriammusic
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Here is the slide from the presentation from Dr. Mesa. Bear in mind this was not researched to the degree that the conversion from HU was. I doubt anyone has researched conversion from Bomedemstat.
The short version is that Dr. Mesa recommended 63mcg Besremi when converting from 45mcg PEG to BES. I would suggest discussing with a MPN Specialist following the HU to BES formula, which would have you starting at 50mcg. You might also consider a more gradual dose titration to reach treatment goal, This can include smaller dose increases than 50mcg. This is what several of us have done.
Thank you so much! This is exactly what I was looking for. What do you do about the dosing? The pre-filled syringe? You are a lifesaver. Thank you for all of your help!
You have to waste the Besremi that you do not use. The syringe is marked in 50mcg units. Any increment between is just an estimate. Here in the States, the 500mcg syringe is the only option. Perhaps we will have a better option for lower doses in the future.
Shame the Bom didn't work out. The public reports make it look promising, but as usual not everyone gets the promise. The sacrifice you made would be more enticing if the med were actually working.
For dosing Bes, as Hunter says it usually starts at 50mcg. This is a plot I made from members' results and shows interesting info on our experience. Surprisingly, some members are holding CHR at very low doses. But those not yet at CHR trend to higher doses.
I will post and discuss this more soon. Here is the prior thread on this info:
My Dr's procedure has me measuring the dose as it goes in. Takes concentration. As Hunter says, the exact numbers for dose aren't. I've also found some abdominal discomfort after the stomach location so I use the leg one. From posts here it seems the needle for Bes may be smaller than that for PEG. Bes has a 30 gauge 1/2", very small. I don't feel it going in, and don't get the red area that some PEG users have reported.
Thank you so much. That chart is encouraging to say the least. I am primarily worried about GI effects since I had to stop Peg due to those. I am hoping that I will be able to tolerate Besremi due to the (supposedly) slight differences in the formulation, as well as the change of delivery model (every two weeks).
Can't say it will help your GI, but you probably want to use the thigh injection option as I found to help minor such issues.
Here is another post I showed some about Bes formulation, just for curiosity. PEG also uses IFN alpha-2a, while Bes uses -2b. I found there is one small difference between them, but the effect remains mysterious.
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