I’m 42 with pre-fibrotic MF (CALR, post-ET), taking 50mcg Besremi. Platelets have decreased from 1000 to just above 400 on this therapy over the last ~2 years.
Since my last injection 10 days ago, I’ve had nightly low grade fevers (37.6-38C, 37 is normal for me) accompanied with headache and heavy fatigue
This is not totally unusual. I sometimes hit a brick wall when I do too much exercise / activity in the first couple days after a Besremi dose and have a day or two of heavy fatigue, sometimes low grade fever.
Before besremi, I had an episode spanning a few weeks where I had nightly low grade fevers (made me think it was more of a disease symptom vs. medication symptom).
Anyone else ET / pre-PMF / MF + Besremi with similar experiences?
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besremiso
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Hi besremiso, I'm 47, CALR type 1 MF. I'm asymptomatic and currently on watch and wait with no therapy or meds so I can't comment on your experience with Besremi. It sounds like it has gone ok. In your view, has it slowed the progression of MF? The fact that your Platlets went back to normal sounds positive. Please let me know. There is an exciting CALR antibody in the early stages of development so hopefully there are some other options available soon.
Besremi has been extremely effective in getting my blood values to within normal ranges, especially given the low ("maintenance") dose that I'm on. I haven't had my allele burden tested since pre-besremi, but my hope is that the mutation has been beaten beat back by the interferon.
Symptom reduction is a big reason I'm on the drug. However, my understanding is it's becoming common to use interferon early in patients as it can have an effect on molecular response, the potential for hematological remission, prevention of disease progression, etc.
Someone on here posted a video from a specialist recommending early interferon usage. I'm not totally sure if it was this one (the title seems right, but remember it being shorter) youtube.com/watch?v=XGEAlov...
hi besremiso! Im few more mths to 42, pmf intermidiate 1 with jakavi, after 6 mths of jakavi (@5mg) currently im having my symptoms slowly back, the significant one is shortness of breath, fatigue, dizziness, night sweats, but I’m about to find out cause later in the evening i will do usg upper abdomen since last month I weigh 97kg and now 105 kg(I think its not normal) until now me my self still wondering whether some symptoms are disease/medical related #fingers crossed, take care!
I'm 47 with pre mf and calr. I'm on Pegasys interferon weekly. I also get bouts of heavy fatigue sometimes in particular after workouts. A few weeks ago I found that I got home from gym and just had to sleep. It doesn't seem constant though. I was better this week. Not sure if you had the same. It would be interesting to chat more given the similarities.
Thanks for sharing. Sounds like our situations are similar. I was on Peg in 2018 but didn't tolerate it well (depression).
It's definitely working out or being too active (lots of walking/socializing) that results in me hitting a brick wall.
Once that happens it can take me a day or two to recover back to feeling "normal"-ish.
The fever/exhaustion that triggered me to write this post isn't usual for me, but the "needing to be aware of remaining stamina" definitely is. I try to exercise daily but can only consistently do 50-75% of my peak capacity, otherwise I tend to pay the price for it.
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