In recent posts it seems Bes is weak in reducing HCT for many while it cuts the other counts ok. I'm in CHR so far on low doses (all blood counts ok) but WBC especially responds (too) well.
Question for members on INF is:
How is your experience for HCT, PLT and WBC with Bes and/or with PEG? Is HCT control requiring increasing doses or PLB?
The short answer for me is that yes, Besremi seems to do more to control PLT and WBC than it does HCT. At least in the short-term. Time will tell for the long-term. I will need top be careful as I increase the dose to control HCT to ensure the leukopenia is not too bad.
I still support Besremi as a better treatment option for PV for many of us. We will all just have to get more experience with it to see how it will ultimately work out.
I saw your last update had 110mcg and 43.8 HCT. You're ok on AEs so far other than WBC levels?
It seems Hb does not follow HCT in direct proportion even as 3/1 is one relation we see. I've also seen one report that suggested Hb was a better guide but that is not what we track.
Things have changed a bit since the last post. The HCT jumped up to 46.3% on 5/11 and 46.5%. on 5/27. Effective 5/25 we upped my Besremi dose to 150mcg. I was expecting this would eventually happen as my iron levels continue to improve. I feel much better with the increased iron levels. We will have to see how I respond the the higher dose.
As for AEs - I continue wo get the lymphopenia and borderline neutropenia. The MPN-doc is OK with that provided LMYPH does not drop below 0.5 and NEUT below 1.0. I am not so thrilled with the neutropenia but as long as I am not getting sick then I will get by. I am also getting the itching as an AE. This is well controlled by daily 24-hour Claritin. I did not experience any change at the higher dose.
I am willing to be patient and give a couple of cycles of the higher dose of Besremi before making any decisions. I might opt for a mini-phlebotomy (250ml) or just bump the dose up higher if it seems I will tolerate it. We will see what happens.
I will post my numbers in an update.
That's consistent with the imbalance we're seeing for many on the HCT. My Dr suggested it should respond over time.
Those are low WBCs. Nice to see some guidance on a lower limit. My Dr seems similar that the worry zone is well below the range zone. I expect to be there soon myself since my WBCs are already down plenty with the very low Bes doses.
As we discussed before I hope someday we can take Rusfertide with INF if needed.
Like Hunter, Besremi is reducing my WBC (50% reduction:15 to 7) and PLT (712+ to 512 or lower ) and I think it has slowed down the rate my HCT has climbed. But as I've shared, I had to just have a PB to keep my HCT at or below 42 after 4 months on the drug. I upped my dose to 150mcg to hopefully prevent another PB. For me, Besremi is the best option for a potential operational cure.
On peg and platelets very slowly decreasing, still high at 702. WBC decreasing faster and now 8.89 from 11. Haematocrit decreased from .48 to .44.
You seem to have a good balance of reductions on PEG. I see your fridge fix helped.
No change for me still. Over the last 6 weeks I went from 300->350->375mcg. Next labs this week. Seeing the post with someone @500 mcg / 3wks and HCT @47 was a little discouraging, but I've come this far so I'll keep pushing it up if I can tolerate it I guess. It seems the resistance of our individual MPN to IFN is highly variable. Since I was able to control my HCT on Peg at 135 I'm hopeful that I'll hit CHR at less than full dose of Bes.
One thing I have a lot of questions about is how long it takes IFN's and Bes in particular to stabilize in the body. I've had at least one specialist tell me that you need to stay at a particular dose of Peg for 2 months before adjusting for it to achieve a new baseline. I more or less confirmed that when I missed a dose and I was fine until about 6 weeks or 5 doses later and I needed my 1st phleb in more than a year. I had another doc explain it on a whiteboard to me where he showed each dose moving the baseline up a little higher until hitting that 2 month mark. It seems reasonable that Bes works at least similarly, which has led me to question their titration schedule of +50mcg every dosing interval. For people coming off another medication there may also be an adjustment period as that medication leaves the body as well. Also the factor of iron recovery in the body if you've been on phlebotomies. I'm sure there's even more variables. Just something to consider for those trying to micromanage the dose and be looking for a definitive change in labs the following week. I played that game with Peg for 2 years before realizing it takes more patience with the 2 month rule.
Agree you're now on a roughly comparable dose of Bes vs your prior PEG. But you recently reported bad symptoms vs less so on PEG, and better HCT response on PEG I recall. Have you discussed with Dr to revert to PEG?
Very interesting about the 2 month thing. More information for us to take into account when deciding whether to change our dose
That is true, but I'm thinking if I find a dose I can stick with I might adjust. I had a rough time titrating up on Peg as well. I'm also wondering if some of these symptoms are more due to the MPN since it's not controlled at the moment. That's why I'm not giving up yet. I want to give it a fair chance and see what happens with the side effects if I can settle on an effective dose. As a side note I'm losing my MPN specialist which is the only one in my immediate area due to an insurance change. Just another thing for me to worry about 
For me Besremi is doing more to control HCT than Peg did. I was on 45mcg per week on Peg and my numbers kept creeping up so I needed a phlebotomy every few months. I couldn't tolerate a slightly higher dose because it gave me terrible diarrhea. I'm having my 12th injection of Besremi tomorrow and so far 50mcg/2 weeks is keeping my numbers perfect. AND no diarrhea!
50mcg is the lowest dose they have published. That's good to see such a response on it. What is your latest HCT?
I think I might need low doses also, but having discussion with Dr on this.
I have an appointment with my Dr on Thursday and will have a CBC then plus find out the results of my recent BMB. Will let you know.
For your case, PEG was inferior for both tolerance and effectiveness. As my Dr said last visit, we're "doing science" which means we're learning new things.
EPguy, I am diagnosed with PV, Exon 12 and have been on pegasys for 15 months. It took a long time to get the pegasys working and ended up with a couple of PLB over that last year. We changed dose in response to bloodwork a couple of times. After taking a few injections off during surgery last fall, had trouble getting going again so increased dose to 135 mcg for a few weeks then back to 90 mcg partly in response to increased side effects. In recent months, my HCT and red cell levels have decreased strongly in response to 90 mcg dose. My latest numbers are HCT=37.3, PLT=167, WBC=2.6. My doc has now lowered my pegasys dose to 45 mcg. My iron is now back to normal as well.
My Exon 12 disease is primarily red cell overproduction with pretty normal whites and platelets. The pegasys seems to have targeted red cells more than whites and platelets. My baseline numbers for PLT was maybe 200-250 and WBC was 4. A challenge for me has been to reduce reds and HCT and keep WBC and PLT in a somewhat normal range.
Thanks for sharing this and other information. If I can give you more info that would be useful, please ask.
Thanks for the good details. Your PLT and WBC didn't need fixing as you say. But did your HCT, PLT and WBC all move together or for example did HCT move down more slowly?
37.3 is plenty low, so the PEG is working really well. What was your HCT before any treatments? Are you feeling well now? I saw your ordeal with the surgery.
That's great you're getting results now on just 45 dose.
My HCT was 48 historically and 68 for the test in October 2020 that showed something was up. Its hard to tell if HCT, WBC and PLT have tracked together with the false starts, PLBs, dose changes, iron level changes. I guess a graph showing the parameters over time might show some trend. My intuitive sense is that the PLT and WBC bounce around a bit but have come down some. Maybe the percentage is similar to HCT.
I feel a bit weak, some breathlessness, but mostly doing what I have always done. I worry about the low white numbers with covid and all and have stayed out of crowds. I felt the higher doses of pegasys. The 90 mcg really started having an effect the last few months for some reason - after a year of treatment with less clearcut effects. I just started the 45 mcg last week so not sure about how thats going to work. Less is better....
I could send you an excel spreadsheet with much data if you have interest in raw numbers.
I think your at least not getting extreme responses (WBCs crashing to get HCT in control) That is good.
At HCT 68 you're more likely to have homozygous Jak2. I just posted details on this, it makes an allele response on low doses more likely. Unfortunately we are rarely tested for which of homozy/heterozy we have.
I agree on breathless, I seem to have a bit more on INF, but it's also part of my Long Covid. But occasional weakness is new to me and more likely related to the higher Bes dose.
4 months in now on Besremi. Had a phlebotomy right when I started since hct was high just before Besremi. Initial dose 100 mcg. Increased dose gradually up to 300 mcg and hct dropped to 42 which was good. Lowered dose to 250 mcg for next month but now hct at 46 and may need phlebotomy again. Platelets dropped from 1500 to 800 with four months of Besremi. Short answer is Besremi definitely slows hct increase for me but still trying to get the right dose. Also it may takes a year or more to achieve the intended effect. In other words I don’t think they know whether increasing the dose for a month has any different effect than keeping the same dose and waiting several months for it to work it’s magic. This is the part I am confused about with dosing. Even if Besremi just lowers the frequency of phlebotomies and doesn’t eliminate them it is worth it for me to get the iron increase and platelet decrease. I think the studies all show that it takes months if not a year for hct control for many on Besremi so I am not drawing any conclusions until after at least a year on the drug.
I also see you other recent post on your Bes results. Do you feel ok on 300? At least you do see a clear HCT response which is good.
Felt a little more fatigued at 300 but who knows if it was the drug or not. Dropped to 250 for next two doses and hct went up to 46.5. Had a phlebotomy and now Increasing back to 300 for next dose. Still trying to get best dose figured out. No major side effects at higher doses so far.
1 Year on Besremi results
Switch from Besremi to Ruxolitinib
