Approved or Trials of RBC lowering drugs?

[jon1972]

Does anyone know of any FDA approved drugs that are more effective at lowering RBC's? I have been losing the battle using interferon. I'm currently taking about 145mcg's of Pegasys and my neutrophils just dipped to .87 while my HCT is still in excess of 45. I've been at this dose for several months. HCT has been climbing by .1 or .2 per month while the other numbers continue to drop. This suggests that I might need another solution for lowering the reds as I'm going to probably have to back off the Peg dosage. I hate phlebotomies but will resort to that if I have to, but was curious if anyone knows of any other options? Thanks.

[jon1972]

I should add that Besremi is not an option. I've tried it a few times and I have an allergic reaction in my mouth and throat when I take it.

[hunter5582]

You may respond better to Jakafi or hydroxyurea, which are both approved drugs. The is also rusfertide that is in clinical trials. Rusfertide is a hepcidin mimetic that helps to control erythrocytosis. The results have been promising.

[jon1972]

Thanks for the reply Hunter. I knew about the Rusfertide trial, but I'm not sure if Cleveland Clinic is participating in that one. There's another very similar drug the my hem said they were going to be doing though. I'm just a little paranoid about trials, but may need to consider it. I'm also hesitant about HU just because of the rumors of increased risk of secondary malignancies. I've been considering going a cocktail route and doing a lower dose of IFN combined with another option, perhaps HU. Is else out there doing something like that?

[EPguy in reply to jon1972]

Have you tried HU before? The combo could be a good option. Is there a reason you're not considering Rux? It's holding my HCT well. Best case could be the Rux/IFN combo if there is a way to pay for it.

Agree those high IFN doses are riskier.

[william-Indo]

If you could accept the cost, consider combo of Peg + Jakafi.I am on this combo for 2+ years now and the result is amazing.

Live like normal person

Cheers

[monarch5000]

Peg + Jakafi or Peg + Rusfertide

[Luthorville]

how long of you been on Pegasys in all? Not just this dose? Based on the results I saw Rusfertide would likely work. They have been looking for additional participants to enroll. You should talk to your team, but I would look into it. Combinations haven’t really been approved. Also it does take 12-18 months for RBC to be controlled. Have you been on the drug that long? What has your allele burden done since you have been on it?

[jon1972]

Appreciate the responses. I have been on Peg since mid to late 2018. I have gone through spells where it held the RBC's down but ultimately it keeps coming back. I think my PV is particularly aggressive. Over the years I've been bumping up the dose of Peg, but have hit a wall between side effects and now my whites being too low while still not controlling the reds. The reason I'm reluctant to discontinue Peg altogether is I'm hoping to slow progression, which given the apparent "aggressiveness" seems important. When I was diagnosed in early 2018 the BMB indicated I was somewhere between stage 1 / 2 MF so this is of big concern to me. I had not considered insurance issues with combo therapy so that could be a deal breaker for me, but I will see what the doc says.

EPguy - I have not taken HU before but I guess if I was to find an affordable combo therapy with IFN that would be the one.

William - That Jak / Peg combo sounds great, but I realize they are both very expensive. Will see what the Hem thinks.

Thanks again all. - Jon

[EPguy in reply to jon1972]

On the possible HU/IFN combo:

I have posted long ago about HU having an unexpected ability to reduce or control fibrosis. Here is my detailed post on it.

healthunlocked.com/mpnvoice...

"HU provide significant marrow improvements in some patients."

but

"very little information exists regarding hydroxyurea’s effect on BMF"

--

At least it suggests adding HU may help and should not be harmful on marrow progression. But other factors apply as usual.

[Buggerbear]

Jon, I have had PV since 2014. I have been on Jakafi about 3 years for PV as I could not handle HU. I had a monthly co-payment but after taking it for a year, pharm co. contacted me and said they would pick up the cost if they could track my progress. I of course agreed and it has really kept my HCT and RBC down. I wish you the very best.

[jon1972]

I spoke to my Hem today and he didn't seem to know much about Jak+Peg combos. He said there had been some clinical trials, but wasn't much data on it. He discouraged Peg+HU because of the fact that I'm struggling with my white counts. He said HU would drive the whites down significantly too. In addition to comments in here like William-Indo's, this article on NCBI seems quite encouraging regarding Peg+Jak: ncbi.nlm.nih.gov/pmc/articl....

However, my doc said it's hard enough getting Peg covered and wouldn't expect them to cover both. So I'm probably going to do a little research to see about grants and such. Otherwise I could consider paying out of pocket for the cheaper of the 2. I know Peg is like 4k a month though, and suspect Jak is even more ☹️