9 month Besremi update

[Elizka]

Hi All,

Latest test results showed that I need a phlebotomy: My HCT was 44.5 and though I'm slightly increasing my Besremi dose (now at 160ish), it hasn't kept the HCT under my target of 42.

I went ahead and got a phlebotomy this past weekend--the full amount of 500ml. the previous one I had was 250ml in May of this year. I'm going to miss having some iron in my body!

Also, a little disappointing: my JAK2 burden hasn't dropped much since starting Besremi as the latest test showed.

4/1/2022 it was 56.13% and on 10/25/2022 it was 53.56%. I thought it was a some progress, but my HEM didn't seem impressed.

My liver enzymes were elevated slightly again: 39.

[ainslie]

9 months isn’t long for complete count control and definitely not long for big reduction in AB, it’s probably the usual options ie increase dose or be patient.

[ainslie in reply to ainslie]

or maybe both of those ie a increase in dose and also give it some more time

[hunter5582]

i would not expect to see much reduction in allele burden yet. That can take years.

I agree about the loss of iron. i feel way better with more iron in my body. Depending on the next lab, i may either have to increase the Besremi dose or do a phlebotomy. We will see what happens.

With Besremi, we are definitely in it as a marathon. It is the long-term effects that really matter most. Hoping for a successful 26 miles for all of us.

[EPguy]

Are your WBCs ok? Not too low? Do you feel ok on Bes? If all is so, your Dr may suggest further dose increases to get to sustained CHR ( bloods in range)

Have you had a full genetic panel? (NGS) This looks for any other mutations we may have.

As Hunter notes, IFN can take time.

[Elizka in reply to EPguy]

Hi EPguy. I believe I had a genetic panel when I was first dx, but I don't have it currently available. I'll request it. WBS's seem "normal" but I did notice my monocytes have doubled over the past six months from 4.1 to 8.2. I feel fine on Besremi now that I got the migraines under control (more on another post to come).

My HEM believes toxicity can come with higher doses and is therefore more conservative. That said, the goal is to get my dose to 200 without impact on ALT or any other issues.

[EPguy]

If you're ok to share, let us know what you find in the NGS.

At my provider, 8.2 is also still in range. I was there at Dx. My Dr doesn't talk about monocytes, maybe they need to get really out of range to be an issue.

Interesting on the 200 number. That is my Dr's goal for me. But I've had a fine response so far at much less so I don't know why he wants that. I have tolerance issues above about 120, but hope is to acclimate at higher. In your case, Dr's plan makes sense if you're ok at that.

[Elizka in reply to EPguy]

Hi EPguy,

I will find out about the NGS.

Re dose: I don't want my liver enzymes to continue to be slightly elevated so I'm going to get to 200 slowly and keep monitoring. I didn't drink much prior to Besremi, but now I don't drink at all. I do miss the occasional fun drink, but it makes sense to me that the less I give my liver to do, the better? It is already dealing with Besremi.

Glad you've had a good response. As I shared, my HEM is more conservative on dosing to make sure there are few adverse events.

[EPguy in reply to Elizka]

Similar here on the booze, I could take about 1/4 can of beer before feeling lousy, now it's just a few sips.

On liver, I agree best to assault it least possible, I've always been spare with Tylenol (Paracetamol) but now on Bes I really try to avoid, max a half pill a few times a year.

Interesting side note, NAC (the supplement some of us take) is used in high doses to save the liver from Tylenol overdose. Could be low doses are helpful to the liver as well as for MPN, but no data I know has proven either yet.

[Elizka in reply to EPguy]

Interesting about NAC. I used to take way too much ADVIL for headaches or prevention of migraines. I'm working on cutting back to 1-2x a week as suggested by my neurologist. I listened to an interesting podcast that discussed how bad NSAID's can be for your microbiome.

Not good at all:

NSAIDs can impair the mucous lining in the GI tract, which can cause a leaky gut. Increased intestinal permeability allows harmful, inflammatory bacteria and toxins to enter the GI tract. This can make you more prone to certain diseases.

I'm careful about what I eat and do many of the right things to improve my microbiome, so taking NSAID's can be negating all that effort.

[EPguy in reply to Elizka]

Agree it's a good idea to minimize the advil, it's a strong drug. I get knocked on my rear if I take any of that sort. My husband is even stricter, he wouldn't even take a Tylenol after a dental implant.

[monarch5000]

I'm not a doc, but think you're doing fine - your counts are like mine were after 1 year on Pegasys interferon. For some PV patients it takes 3-5 years before interferon reduces the need for periodic phlebotomies. If you've never had a blood clot or microcirculatory impairment symptoms you might consider stretching out the phlebotomy intervals to rebuild your iron levels even though stretching might cause your HCT to reach 46-47 inbetween phlebotomies.

[Elizka in reply to monarch5000]

I like having longer durations between phlebotomies, but for me, I think the risk of cardiac or clots (no history at all) is slightly higher with a more elevated HCT. Research has show that to be true.

[GardNerd]

Interesting. What’s your doctor’s reasoning for a target of 42 for the HCT? My previous doctor used 43, but I hear others say 45 is the number. My current doctor (I finally went to an MPN specialist) uses 45.

He’s also been aggressive on increasing my dose. As long as I’ve been tolerating it, he increases it by 50 every two weeks. My last dose was 500. The journey has been pretty good, but I do feel a bit of melancholy since hitting 350-400 and definitely some fatigue. That’s about it, though. I’ve been okay with his approach, because my allele burden is high and I want to get after it.

Best wishes to you!

[Elizka in reply to GardNerd]

Women have lower HCT levels than men and smaller vessels. Both my Stanford and local Hem have advised me to always target 42. Interesting on your doses. I'm glad to hear you you haven't had issues. I'll get to 200 slowly and then see where I'm at. I do like the idea of reducing the allele burden quicker.