I thought you might be interested in an update of my experience to date with Besremi.
I started on Besremi 6 months ago as I was proving to be HU resistant and Pegasys and Ruxolitnib were both considered inappropriate due to my medical history.
For the first 3 months I transitioned off HU by reducing my tablets by 1/week while gradually increasing my fortnightly injection of Besremi. I started the transition by reducing HU to 15 tablets/week supplemented by a small injection of 50 mcg of Besremi. The effect of Besremi was immediate and dramatic as I no longer require venesections and since this initial dose I have achieved complete haematological response.
I have since increased the Besremi gradually to 250 mcg every 2 weeks with no side effects and my consultant has described the result so far as excellent and transformative.
I am discussing with my consultant whether to increase the period between injections from 2 weeks to initially 3 weeks and eventually every 4 weeks.
I am very happy to be on Besremi as it seems to be having a positive impact on my PV while allowing me to live a normal life.
Please bear in mind that this is my experience of Besremi and should you start on a course of treatment your experience may differ for better or worse.
John
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JohnSC
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Hello JohnC ! Omg I’m so happy to hear this good news!!! You are very fortunate to be able to get this medicine as I am in the United States, New Jersey waiting desperately. I pray you continue to do well. I have been very frustrated since my numbers are at 1.2 million with four capsules of hydroxyurea a day I hope to be able to get this medication soon and hope it will be my help to reducing that number. God bless you!
Any idea how dosage levels compare with Pegasys? ie if on Pegasys at say 100 mcg weekly would you move to 100 mcg Ropeg every other week or 200 mcg? Or is a Ropeg dosage more potent so need less?
Ropeg appears to be very expensive and comes in 250 mcg syringes which allow two shots but must be used within 4 weeks?
Sorry I can’t advise on Pegasys to Besremi transition as I was on HU before starting Besremi. I know my consultant discussed in detail how to best transition with the experts running the Besremi trials and it would probably be best if your consultant also contacted them should you decide to move onto it.
Glad to hear you have had a positive experience with Besremi. I am currently having great success with Pegasys, but will likely switch when it becomes available in the USA. That will hopefully be in November.
Thanks for sharing so happy for you I’m in Canada and on Pegasys since 10 years once a month now but a low dose not totally controlled platelets around 500K want to switch to Besremi when available
Thank you for taking the time to update us John. It's great that you have responded so well! It's good for us all to have such a positive posting. Many thanks and stay well.
Lovely to read positive news first thing! As someone with ET who is about to come off HU (after 10 months) by request and not because of intolerance or resistance, may I ask why Pegysus was considered inappropriate? I thought that Besremi was ‘just’ a longer-lasting formulation.
This is a real life example of the improvement Besremi offers. The mfr claims this is supposed to happen, I've not seen a real example before.
In the US if a drug is approved for example for PV, the Dr can prescribe "off label" for ET. But getting insurance to cover can be harder, although if PEG is being covered Ropeg should be at least as easy.
Before that can happen we need the Ropeg FDA approval in US.
Great news! I recently switched from HU to Peg. I discussed Besremi with my MPN specialist but it is not approved (yet) locally for ET (only PV) - so far Peg has been great so hoping that continues!
Sorry for the slow reply. Besremi is not yet available via the NHS so I have had to go private to obtain it. Hopefully it will be approved soon so the it will become more widely available.
Did you have any ongoing PV complications? I really don't at all. I keep my HCT controlled with phlebotomies, take aspirin and I'm good. So while I was waiting for this exciting drug, I'm concerned about all the possible risks.
So far so good when it comes to complications. I haven’t yet got to my final dose age as it takes time to find the ideal long term dose but I am feeling positive. With regard to all the risks, Besremi is no different to other drugs. They all have comprehensive lists of possible complications, but in my opinion the potential that Besremi’s has to positively change the course of the cancer outways the small risk of adverse events.
Hi. That’s such great news! I’m very happy for you. I’m thinking of asking to get on it when I see my doc soon & wonder if you could explain in more detail what your hematological response was. Thanks Katie
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