I had my second opinion hospital visit with an MPN Professor- l was very impressed, these people really do know all the issues .
Had long chat about my history bloods and meds.
He offered to take me on as his patient.
He suggested l switch over to Besremi. I have to see a Psychiatrist as it is protocol here for everyone on Peg/Besremi. I have a psychiatrist/ therapist who knows me well and l have been seeing for a while so will discuss next visit
l wanted to know if anyone here has experienced psychological issues with Peg and what was involved and what helped.
I have till February to decide so going to think about the change but value and appreciate your opinions
although I can’t help you with answers, I’d just like to congratulate you on your positive consultation. I’m amazed by the level of health care in Germany.
I would imagine if you decide to go with Besremi you will be very well monitored, especially under the care of an MPN Specialist. It’s a difficult decision for you, as hydrea is presently working for you, but I understand if there is a chance of a deeper molecular response with Besremi, why wouldn’t you?
Hi , good luck with your decision . I think I would go for peg if given the choice. For me lol the biggest decision factor is the fact that it’s given through injection.
Personally, no psychological issues with INF. I did switch from HU to INF about 3 weeks after the initial diagnosis of PV. IMO, HU only makes sense if one’s doesn’t tolerate INF, not the opposite. No hesitations regarding Besremi. This drug is a gift. Go for it!
Glad to hear that you had the consult with the MPN Specialist. It sounds like switching to this doc would make a lot of sense.
I have not made the jump to a PEGyated Interferon yet, but it would be my first choice when I need to go back to meds. Besremi is supposed to be easier to tolerate and have fewer side effects. I am hoping it will be available here in the USA by the time I need it as it would be my preferred form of PEG-IFN.
It is reasonable to have concerns about the side effects of any med, including Besremi. All of of the meds used to treat MPNs have significant potential adverse effects. In comparing Besremi to the others, I think the risk/benefit profile is more favorable than the other options. However, that is based on my own experiences and preferences/risk tolerance. We are each different and each respond differently to the meds.
It sounds like you are well connected to services and would be monitored for how you react to the Besremi. It seems like a reasonable thing to try given how promising the research on Besremi looks. Ultimately, you will just have to decide which risk/benefit profile you prefer. It is great that you have a choice. many people with MPNs are not readily offered the choice in their system of care.
All the best to you.
Thanks everyone l appreciate all the advice I am seeing my psychotherapist this week which is a requirement for Besremi so am definitely leaning towards giving it ago starting in February. My platelets are down to 540 so Feb might be good timing.
I do like my current haematologist but l was impressed by the range of resources and the set up at the hospital. l do appreciate the healthcare system here, we pay lots in healthcare taxes but you realize it’s worth it. I believe in Hunters advice that assertive patients get better access to services and it’s definitely worth getting second opinions as it may offer a new perspective
So you can take Besremi for ET? Is it a clinical trial or something? Besremi not yet approved for ET. I am normally going to start with pegasys. If i could I chosse Besremi
Hi my understanding is Besremi is replacing Pegasys. Not a clinical trial as far as l know but the hospital is a research center so l will check - good point.
HiDovme. That sounds like a great opportunity. I would go for it. I have recently had issues with side effects of Pegasys and would jump at the chance to try Besremi - fewer reported side effects. What's to lose with good monitoring support? Good luck.
Hi, not sure if this will help but I’ve had chronic depression & anxiety for a long time & am taking meds for it. I asked my psychiatrist if he thought it would be bad for me to take Besremi given my history. He said since both are well controlled with my medications there should be no problem. But to be safe if I get on it I’ll watch carefully for any flare ups of either. Katie
No here in Germany it’s currently only approved for PV patients. But this may change to include ET. I chatted to a others on Besremi at the hospital and they are all very positive. I am on Peg it’s been a year now had some issues during first few months. It’s going well. No side effects.
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