Rusfertide vs Besremi

Posted by bracha @bracha, 3 days ago

Seems like Besremi has more intense side effects, but Rusfertide has only recently been released so may not have much data recorded.
I was recently told to take Besremi after doing just phlebotomies 3 times a year for two years. At 74 I'm not wanting to spend the next years experiencing "significant risks". My blood numbers wouldn't support using HU or Jakafi. My VAF is considered high as well.
So confused when feeling so healthy. . . . ....

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I have been taking Besremi for 1 1/2 years. So far the only side effect has been psoriasis, for which I am taking Skyrizi, which has eliminated completely the symptoms.
The list of side effects for any drug are constantly evolving, and they can only be discovered when patients report them. Psoriasis was not specifically reported as a side effect of Besremi when I started taking it, but it is now. Rusfertide is brand new, so who knows what the side effects will be reported 5 years from now. I would feel better taking a drug that has been on the market for awhile and the side effect list is fairly complete than one that is new, unless you are participating in a clinical trial because so far nothing else is working. Most side effects are reversible, so if you can't tolerate it you discontinue the drug. For me, with the information I have read, Besremi has the most to offer PV or ET patients as far as reducing the allele burden and reducing the risk of progression. Having said that, Besremi so far has not reduced my allele burden to my satisfaction, but it has kept my hematocrit down to 36. My hematologist has mentioned a couple of strategies that have been used to push down the allele burden, so we are going to discuss them later this month.

REPLY

I have ET Jak2 have taken HU for 3 years platelets not coming down, was taken off HU then prescribed Anagrelide, platelets still not coming down, taking Anagrelide 2 times a day now. If platelets don't come down was told I will need to take Besremi. I'm 78 and really not sure about taking Besremi. I may not have a choice. Will find out on Oct 13th when I see Dr again. I'm praying platelets will be down.

REPLY

I am 78 and just started Besremi. Just recently stopped HU which was on for a year. So up to 150 on Besremi and nothing but aspirin. I will be anxious to know what the labs say when I get the next in 10/15. From my research it takes time for the jaj2 to begin to reduce. I have PV. No real side effects on either drug. Very surprising! I just keep pushing forward on my very active life!

REPLY

I admire you for moving forward, I am also 78, I'm trying to do the same, I was on HU for 3 years, platelets did not come down, now taking Anagrelide platelets still not coming down, will find out on Oct 13th if I need to start Besremi. Thank you for commenting that you are not having side effects taking Besremi. I've bn nervous thinking I may have to start it. I'm also taking the 81 mg aspirin every night.

REPLY

I was diagnosed with PV in late spring and started Besremi. The only side effect I’ve realized is fatigue and itching. That said, can’t be positive that it’s related. My labs are looking very good.

Good luck!

REPLY
Please sign in or register to post a reply.