After my initial two doses of 150 mcg, I experienced a fivefold increase in AST and ALT levels, and my leukocytes dropped below 3. I paused the treatment, took liver medications, and the AST and ALT levels normalized. For the next two doses, I reduced to 100 mcg, which brought my HCT down to 45, HB to 15, and RBC to 5.5M.
Because of the still present fatigue, together with my haematologist, we experimented with lowering the dose to 75 mg.
My numbers remained stable (within a 3-5% variation) over the next two rounds, fatigue was decreased.
My dilemma is about the optimal Besremi dose:
1. Should I use the maximum dose that maintains normal blood counts (for PV patients: 35% ≤ HCT ≤ 45%, normal PLT and WBC) but is still tolerable without side effects? (In my case, 100 mcg.)
2. Or should I use the minimum dose that maintains normal blood counts? (For me, this could be 75 mcg, or possibly even 50 mcg.)
I understand that a higher dose (Option 1) might more aggressively target mutated stem cells, potentially increasing the chance of a molecular response but at the risk of greater toxicity. On the other hand, a lower dose (Option 2) minimizes toxicity while maintaining normal blood counts, but it might not be as effective in reducing the allele burden.
What is the recommended approach for dose reduction below 100 mcg? Should I reduce to 75 mcg, maybe consider 50 mcg, or increase the injection interval from 2 to 3 weeks, and then possibly to 4 weeks?
Additionally, I have a question regarding fatigue: When experiencing normal blood counts and iron levels, how can I ascertain if my fatigue is due to PV or it is from another cause, such as lack of exercise or something else ? Is there a specific blood test that can identify that the fatigue is from PV, perhaps by measuring certain cytokine concentrations? I dont know. What would be the first thing to check ?
Thank you for your guidance.
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skakulec2
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You indicate that the higher IFN dose is causing your new fatigue, and a lower dose can work for blood counts. My opinion, (and only that) is go to the lowest effective dose. Like you I had fatigue, and malaise, related to IFN dose, and dose sizes similar to yours. See this post for my real time thoughts on this:
Unlike anyone else here (thankfully) I had one of the worst possible IFN outcomes that is listed in the FDA black box label warning. My dire outcome was triggered by a flu vax while on the higher IFN dose.
It's possible my strong dose/fatigue/malaise relation was a predictor. Other than that I had flawless blood counts and good allele reductions. Like you I probably could have held blood counts at 50mcg, and in hindsight I would most likely still have my health had I done so.
I am a proponent of the low -and-slow dosing strategy for Besremi dosing. For many of us, using the lowest dose needed to maintain a complete hematologic response optimizes the benefits while minimizing the risks of Besremi.
I also experienced a 3x/ULN increase in LFTs at 150mcg. I was able to return the LFTs to normal using a Milk Thistle Extract prescribed by my Integrative medicine doctor. I kept the dosing at 150mcg.
I never experienced fatigue due to the PV nor due to the Besremi. I did experience a loss of energy levels due to the phlebotomy-induced iron deficiency. The fatigue resolved when my iron levels improved. There is no blood test that i know of that would tell you if the fatigue is from the PV. Sometimes timing is the best clue. Did you have the fatigue before starting the Besremi? Does the fatigue improve on a lower dose? My PCP says "the simplest explanation is the best explanation." It is worth noting the exercise is one of the effective interventions to improve MPN fatigue symptoms.
I have stayed on a relatively low dose of Besremi. I increased in 25mcg increments from 100 to 150mcg. I just recently bumped up to 175mcg. HCT has crept up a bit as my iron levels improve. Note that on the low dosing strategy, my allele burden reduced from 38% to 9% in 18 months (as of 12/2022). I am about to retest one year later. I hope to see the allele burden even lower.
We are all still learning about what dosing strategy will work best with Besremi. it will take real-world experience to figure this out. I expect that we will find that one size does not fit all. In order to make a choice about your dosing, suggest you review with your care team your treatment goals, risk tolerance, and make a determination about what is in your best interests.
Agree with EPguy and Hunter. There has not been solid proof that higher dose of interferon yields more clinical benefits. On the contrary, it is known that high dose of interferon could lead to liver related issues. Stay on the dose which can maintain your counts is a wise strategy. Best wishes.
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1 Year on Besremi results
