Has anyone started taking MIMRYLO for PV yet? It sounds promising!

Hi @cmchesh. It’s only been a couple of week since Mimrylo (rusfertide) received FDA approval. (August 28, 2026) So I would expect it will take some time for patients to get insurance approval and make any changes in their meds.

But it looks like a promising new medication to help curb the overproduction of red blood cells in patients with PV. It’s great to have other options for patients who may not be tolerating HU well.

Feedback will be interesting! Will you let us know what your husband finds out?

Hi I was diagnosed with PV 5 years ago. I’ve been taking Rusfertide for 3 yrs. on the drug trial, and it’s been godsend to eliminate need for phlebotomies & boost my ferritin. My ferritin went from 5 to 120 which is the middle of the normal range.
The only thing to keep in mind is it’s not a substitute for Hydroxy as it doesn’t lower your platelets. My platelets went up to over 1100 during that time, so I had to start Hydroxy, as well, earlier this year. I’ve been on 500 mg 5 times a week, and my platelets are slowly coming down…I get tested again in 2 wks. The only side effect from Hydroxy is mild fatigue…..from Rusfertide a mild local irritation at injection site once a week.

We’re applying to get consent to start Besremi to replace the Hydroxy, but the possible side-effect of development or increase in mental health problems and depression from Besremi is a concern. The promising fact is it can possibly put PV in remission…. something Hydroxy can’t do.

I hope this gives some insight.

@calbaric Wow! I have been following Rusferitide and waiting for its availability! I’ve been doing ok with the HU six days a week getting phlebotomies about every eight weeks. Platelets stay just below 400 or around there. My iron is awful and when it starts to rise, I’m back for my next drain and it tanks again. I feel ok on this schedule but this new drug actually tricks your body to make less red cells yet platelets still need the HU. I’m concerned with the coat once it’s available and hope to get some kind of card or program. I have PV JAK2 now for almost four years, just turned 60 and feel like shit some days and ok others. They say the iron levels cause this more than the PV! Please keep us posted. I’m not interested in Besremi. I do not t need mental issues and my Dr said the side effects are worse than what I already have.

@nypara66 My husband is checking with his doctor. As soon as we get info will let you know. Hoping Aetna will cover a lot of the cost too. We will see. Thanks and good luck.

@calbaric I have PV JAK2, dx’d March 2026. I have been on HU which works well in conjunction with phlebotomy to lower red cells. However my platelets have always been fine, and the HU is causing them to plummet, requiring I take HU holidays even tho I am on a low dose. (500 mg daily). Is it correct that Rusfertide does not impact platelets, only RBC? That would be cool for me….

I am on Besremi, I have only taken 3 doses but have had no side effects. I will have a complete cbc this Monday, first test since starting the drug.

@ckmrust
Yes, that’s correct and it will eliminate or lower your need for phlebotomies & allow your iron to recover. On Rusfertide, my platelets increased significantly, so I had to start HU to lower them.