Hello!
I have reduced my dose to 100mg from 150 every two weeks as my HCT began drop below the normal range.
So far, the allele burden continues to drop: From 56% in April 2022, when I started Besremi, to 7.96% in January 2025.
For some reason 2024 was left off this report: 24.67% in Feb 2024 and 13.17% in June 2024.
No disease burden at this point. Maybe some fatigue but less than before.
Great to read of such promising results!
A great example of patience for the med to take effect. Just under two years for the drop to really get going. It's always nice to have a reason for a dose reduction. And feeling ok is tops.
Do you have HCT results for these times? Maybe HCT response sort of matches the AB reduction.
Here is my HCT for the same time period. Two years to drop 50% on AB! It also took a while to see my HCT drop, but I only have had 1 PB since starting Besremi. I have always been on 150 mg until the last month.
From that plot you've been at or near CHR even before the AB started down. Your AB response starts the same time the HCT started its obvious decline, see this plot with that note added. In prior posts we've seen the reports of correlation CHR to AB reductions. But in your case it's more like sudden decline correlating to that AB reduction. (assuming the prior CHR was not via phlbs) Similar concept for these two, full blood response and mutation reduction, being often connected.
In my case a sudden drop in HCT predicted in hindsight my calamity. But that's a unique event. But it does suggest letting up the Bes when HCT goes low as you've done.
That is great news! Patient persistence overcomes resistance.
I wanted to mention this paper: onlinelibrary.wiley.com/sha...
"Our findings indicate that ropeg treatment at a higherinitiating-dose regimen exerts a strong anti-neoplastic effectby effectively depleting JAK2V617F -carrying neoplastic cells inpatients with PV. Despite the CHR rate reaching a plateau, theJAK2V617F VAF or allele burden continued to decline, indicat-ing that the treatment continuously eradicated the neoplasticclones. Our results suggest that a higher initiating-dose reg-imen, with the flexibility of dose schedule adjustment from biweekly to monthly, i.e., once every 3–5 weeks, after the CHRis stabilized with 1 year of ropeg treatment is associated witha high chance of neoplastic cell clearance and robust clinical benefits including a durable CHR and no disease progression,with a favourable safety profile in patients with PV. Whether the remarkable molecular response and clinical benefits ob-served over the 2 years of treatment correlated with prolonged patient survival remains to be examined over the long term."
I did not start at a higher dose.
I posted some detail on this report:
healthunlocked.com/mpnvoice...
They observed a break in the previously known CHR-MR correlation I discussed above.
Question was whether this break accelerated the normal drop off of CHR over time. See comparison to the regular Bes trial (conti-PV). If the study goes a couple more years we will know more.
hi Elizka,
thank God that B is working so well for you!!
My platelets went down super slowly with Besremi. I eventually went up to (careful here) 200 mcg. Micrograms and not mg. within 7 months all the while reducing Anagrelide from 4 to 3. In the 9th month the platelets plummeted to 250 for the first time in 17 years! I was ecstatic.
Month 9, I had an accident with my wrists and R shoulder. That set off a bit of pain. Then after every injection the pain got worse then better. The pain moved around from R to left, the R - left hand and with each injection got worse and for longer periods of time eventually spreading to all joints, where I had had an accident. Feet, neck, knee. Excruciating, crippling, paralyzing pain! I could even pull back my covers or lift my head. Meds didn’t help, only natural treatments. The pain was at the joints but not in them. no swelling. It was my immune system attacking my tendons and ligaments. No doctor could help except electro pulses with a permanent needle on my ear acupuncture point.
Month 14, I stopped Besremi for 2 months. All went away. The platelets very slowly rose. I started on 50mcg and all was well. After 1.5 months went up to 75 and a felt something then the pain started coming even with 50mcg.
I stopped completely at month 20. Which was 7 months ago. I’ve had to slowly increase anagrelide. I’m up to 2-3-2-3 alternating daily. PLT up to 650 only (when starting Besremi i was at 4 anagrelide and average 750 PLT) Anagrelide still causes heart, skin and memory problems. Besremi is still working! I am planning to start again in March on minimum dosage and stay there. Nothing has worked so well. The trick with me would be to keep the immune system modulated. Hope dies last.
that is a remarkable result. Congratulations to you and your care team! This new year of 2025 is off to a fantastic start.
This is really encouraging for me Elizka as I started Bes on a 50 mcg dose mid Nov and already has seen a positive result my plt are lower than they have been for years or more, at just over the 700 mark. They have been as high as 1500 during that period. My HCT tended to be around the .45 borderline on every 6 wk check up and on Friday was .41 (yeah no vene!!) and my WBC down to just over 13 from around 15. I can't believe it's working so fast but as many of you may recall, I have always been very much on the natural health 'way' and so all my life (I am now 56) have hardly ever had meds (until now) My turning point was AB 77% which I discovered in sept. So obv will take a while to see how this comes down but I am feeling so pos+ and v blessed at the response of my body so far - now my haematologist is wondering whether to nudge dose to 100mcg once per fortnight or to leave well alone with the results being so encouraging. ?? If any one has any thoughts on this. I guess 100 is still a relatively low dose - I am fortunate not to have experienced any obvious side effects, bar slight inc in that dreadful itch after bathing/showers. But a small price to pay it would appear and that may dissipate in time as the cell counts reduce maybe? Thoughts on any of the above would be welcome. I just hope that I am able to stay with this drug which clearly is suiting me so far. Healing blessings to you all on this shared journey back to health - Sarah x
I am currently on 100mcg of Besremi and am encouraged to titrate up to 125mcg. I am not sure if I want to since I feel well at this dose. 100 mcg is a low dose, but if it works, that's all good! My MPN was able to put me on a small dose of Ruxolitinib (5mg2× daily) to control itching, since nothing else I tried worked. Maybe ask if this is a pathway you could take to better control your pruritis.
Thank you that is really interesting, I think I will see how I go at the 100 mcg, perhaps introduce this from Feb when I will have been on the BES for 3 months - and then if that doesn't suit, I can always drop back down without any further ado. I didn't realise that the RUX would stop the itch at least if this doesn't improve then I can try the combined drug approach too, can't seem to get enough of the drugs now I have started - ha ha!! Wishing you well Pogm and thanks for replying to me x
My HEM has always been focused on making sure the drug has few, if any, side effects or issues with liver, etc. He believes in a lower dose to get the advantages without complications. I would stay on 150mg, and might go back to that, but my drug is working too well on reducing my counts. When my HCT got low, it was time to reduce the dose.
Great news!!!! Did they ever mention once a month dosing? I think I am about to be in the same boat. Holding strong hct staying rock solid at like 36.5-37. But wbccs and platelets could in my opinion use to be a little higher. I am going to discuss once a month dosing instead of decreasing every 2 weeks. I just don’t know if that is a thing really or not. It says you can but doesn’t seem like many do. But May will be 2 years since phlebotomy and next month 2 years on Besremi. I am so happy for you!!!!! Yeah!
It's wonderful to witness your good results too. There is the option of dosing each month and I guess that is another reason logically for me to inc the dose to 100 mcg, then I can ease in with this once a fortnight in the knowledge that once the blood counts settle, I can go once monthly at a dose of between 100-150 mcg if that is tolerable. I also imagine that at the end of the #bonusyear where I have been able to get BES due to PEG shortage, then there will be perhaps more likelihood to stay on the drug if I can have a more economical use of the syringe, it is such a waste having them pre-loaded with far too much for a low doser like me, but then with the 30 day shelf life it's unavoidable for there to be some wastage, we need smaller units!
Thanks and wishing you well too x
This is so great to see!!!! Yeah!!!!
JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis
Update on my jak2 AB
