I have been on Besremi since June 22. Largest dosage was 100 mcg. I recently went to 50 as my h/h was 39 and 13. The Best yet! The Besremi seems to finally be kicking in and working well. Unfortunately, I have experienced anxiety and depression in the past 6 weeks. This is new for me. My autoimmune issues have gotten worse. Alopecia and vitiligo. My Mpn wants me to try a low dose of Jackafi and take a break from the Besremi. I would appreciate any thoughts or any similar situations with very delayed onset of depression which I realize is a well know side effect.
Thanks!
Jeanie
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JeanieRN
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It sounds like you are on top of this as potential Besremi AEs. For all of its benefits, Besremi can have unwanted effects. Some may diminish as your body adjusts, or not. You are the best judge of how you are reacting and what you are willing to risk. It seems reasonable to try a sitch to Jakafi to see how you react. You can always go back to Besremi later if Jakafi turns out not to be viable. I think that is what I would do in this situation. Sometimes we only find what works by trial and error.
Thank you Hunter! This reply means a lot coming from you! Funny, never meant, but your opinion means a lot as does others! I haven’t quite grasped the trial and error of MPN’s as my first experience clotted off my liver and left me with a 7 week hospital stay in 2021….so still very afraid to try new treatments. Luckily my MPN has agreed to check my labs every 2 weeks until I am stable so that is comforting and I have my follow up apt with the Mayo Clinic next week!
Thank you for your kind words. We are all stronger together because we share support and what have each learned.
Sometimes medicine is a matter of trial and error. We can hope for the day when an analysis of our genome will allow precisely tailored treatment for MPNs and other illnesses. Bit by bit we are getting there. Meanwhile, we must just use the best judgement we can.
I have experienced how important it is to be clear about our treatment goals, risk tolerance and treatment preferences. We have to take risks when we make fundamental changes in how our bodies function to treat the MPN. We must sometimes be willing to take some risks to accrue the benefits we seek.
Monitoring your labs every two weeks is an excellent idea. it is what I have done with each new stage of my treatment for PV. This is prudent, allowing for effective monitoring and dose titration.
Wishing you success in the next stage of your journey. Please do let us know how you get on.
sounds as if your Haem is right, it can take months or years for some of the neg issues with Besremi to kick in, I saw a presentation from the New York doc to doc conference
by Dr Gisslinger in Oct ,it showed long term cumulative drop out rate for all reasons was over 60%, that surprised me , the data for the slide was provided by Dr Hasselbalch, both big fans of Bes so likely to be accurate presumably.. Still for those that can tolerate it it would be my drug of choice of the current ones. The good news is as you might have read Clair Harrison and team have shown Rux can for some lower allele burden and extend survival and it’s easy to tolerate by nearly everyone, great at controlling counts too.
If it was only the depression etc some haems would suggest mild anti depressant but with the other issues you’re having I doubt it’s doible to continue. I am on Rux and doing great with no sides.
It's not true that the "cumulative drop out rate for all reasons is over 60%" for patients taking Pegasys interferon. In this video, Dr. Kiladjian describes the results of a 6 year long trial, called the PVN1 trial, of Pegasys where a substantial % of patients discontinued treatment after a 2-4 year for efficacy reasons rather than for intolerability. By efficacy, I mean 30% discontinued because they had achieved molecular remission; i.e, Minimal Residual Disease: youtu.be/vuhwGEi4Y_k
I attach the slide showing discontinuation for any reason.
What I can tell you for a fact is Kiladjian told me today in a private conversation at the MPN foundation conference in Phoenix that the drop out rate due to intolerance was 30% for Bes and Dr Silver and Kiladjian said Peg and both agreed discontinuation for Peg and Bes was same, that was also said by them today.
I personally would not want to give up on interferon unless all possible alternatives had been exhausted because giving up can mean giving up the chance to live a normal lifespan. Alteratives include: Trying Pegasys interferon instead of Besremi interferon. A fair number of patients find Pegasys has less intense side effects and its also 4 times less expensive. Try the combination of a low weekly dose of Pegasys and a low daily dose of Jakafi. Go to a different specialist if your current specialist is unreceptive to you trying these alternatives. The specialist in this video is experienced and receptive to considering these two alternatives and he also talks frankly about the shortened life expectancy of PV patients not taking interferon. youtu.be/Yp7W1ob60p8
Hello,I have been on100mcg Besremi for 18 months. Unfortunately, my thyroides got worst and worst slowly. My hema stopped for 1 month and Dr. Spevak recommend stopped it also. He usually gives a holiday for Besremi, BUT think about each case is different. In my case they recommend it. Next week new appoitment to know what we will do. Best regards
I am on 50-75 mcg. of Besremi. I also experience the depression and anxiety. It comes and goes but is definitely there. I take Wellbutrin to help. I am very interested in this combo therapy with Jakafi. Had not heard of that before. If there are members with info on that, please post! Wishing you all the best!
The videos were very helpful, thanks. I am just starting Besremi for PV, currently at 150mcg, going up by 50 mcg each two weeks, heading for the 500 mcg dose. (My platelets are over one million, and hematocrit only just brought into the norm with the few phlebotomies I've had at this, the start of my treatment. )
I wanted to mention that because I am in a small US city with no teaching hospitals, I opted to see an MPN specialist at the Mayo Clinic by video. After our meeting, I opted for Besremi over HU, and sent in drawn blood for further genetic testing, as I wanted to know as much as possible at the outset. The Mayo doctor sent the results (genetic analyzing is beyond me at this point!) saying that although I had genes predisposing me to the JAK2 mutation, I don't have any other known genetic predisposition to developing disease beyond PV. Bad enough, of course, but I take my relief where I can. My allele burden is around 40% so let's just say I have something to look forward to as I go forward in treatment, which in these first weeks has been fairly uneventful. (Though when I have symptoms like insomnia, dizziness, blood pooling sensations , it is hard for even my doctor to know what is "talking"--the PV, the Besremi, or my stress level. )
I was pleased that these studies are indicating that allele burden is showing some clear correlation with blood counts. I just wanted to add that there is apparently more genetic info available that might help people choose whether or not to push through or change course. I'm sure many MPNers are like me--I find the choosing can be one of the more tortuous parts of the disease.
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