Besremi & Jakafi Combo has begun

[Luthorville]

PV positive. Discovered in August 2020. I have been on Besremi since May 2023, but only on the full 500 mcg dose of Besremi since June 2024. My platelets responded very quickly from 1.1M to between 200 and 300k within 6 months of starting the Besremi. However, my HCT has been very stubborn.

I have been averaging a phlebotomy about every 80 days while on the drug and the pace has not slowed though there is some evidence that it might have if we had continued with just the Besremi alone. Possibly...

However, during a recent appointment I needed another phlebotomy and it had only been 55 days at which point my doctor and I decided to start Jakafi in combination with the Besremi. We had been very actively discussing Jakafi as a combination because of the discussions here.

I started Jakafi about 3 weeks ago so I haven't been on it for that long. But here's the early update 3 weeks into Jakafi in combination with Besremi.

I just had my labs drawn and my HCT was 38.8, which is the lowest level I've had in years, including prior to my diagnosis. My prior low was 40.3 in the past 6 years. My RBC also dropped into the normal range, also for the first time (5.27) which you can see in the graph I included. My itchiness went away almost immediately after starting Jakafi. I had been taking Cetirizine, but stopped because it is no longer needed to mitigate the itchiness (it controlled it about 80-90%), but I'm now a zero on the itchiness scale and I haven't taken it in about 2 weeks.

I just had my allele test done and should have results soon.

It's still very early with Jakafi, but the early numbers are encouraging. I'll be back once I have the allele results.

It's possible the HCT and RBC number would have been this low regardless of the Jakafi, RBCs bounce around, especially only 3 weeks after a phlebotomy. I've never had blood drawn so close to a phlebotomy so one would expect HCT and RBC to be lower closer to it. Will know more in the next few months and with the allele result.

[hunter5582]

This looks like very good news. The combination therapies are very promising, particularly for those with treatment resistant cases. Please do keep us up to date on how this goes. Your experience can benefit many others.

[Hopetohelp]

sounds very encouraging. Thanks for sharing

[ainslie]

sounds good , can I ask you what doses you are on with the combo?

[Luthorville]

500 mcg Besremi every 2 weeks and 5 mg twice a day Jakafi.

I did ask when we might lower and it is data dependent. I am being monitored every 2 weeks -

[Luthorville in reply to Luthorville]

Also reposting this here which was originally posted by Hunter.

This really does summarize my thinking on how best to treat this condition.

youtu.be/6cU2fU-22V8?si=4K-...(Not working as expected?)