Starting Besremi

[JohnSC]

Hi,

As Pegasys, Ruxolitnib and Hydroxy are no longer appropriate for my PV I have just started to transition to Besremi. The treatment consists of an injection every 2 weeks with a special syringe which I am finding easier to use than the Pegasys syringe as the needle is finer making for a painless injection.

Apparently I am only the 4th person in the UK to be prescribed Besremi, but I am very hopeful that Besremi will be effective in controlling my PV as the trials seem to show it is superior to other available treatments.

Unfortunately Besremi is not yet available on the NHS so I have had to go private to access the treatment but I hope my experience along with the others will help make the case for it to be authorised by the NHS.

I hope to be on Besremi long term so I will post regular updates on how things progress.

[hunter5582]

Glad to hear you found a way to access Besremi. It is one of the most promising interventions for PV we currently have. We are waiting for FDA approval here in the USA. Hopefully we will have access soon. Do please let us know how you get on.

[JediReject]

Hey JohnSC, , fair play to you for blazing a trail with this Besremi treatment here in the UK. I hope it works well for you to make your investment in your health and wellbeing worthwhile. It's more of a leap of faith I think when you're funding it, I was lucky in the early days of Ruxolitinib to get it via the Cancer Drug Fund.

But as you say if it bears fruit then it adds weight to get it approved for a wider patient use.

I've lost touch with many developments so will have to read up on this injection.

Good luck going forward.

Chris

[ggrana]

Hi JohnSC ! Good luck with the Besremi! Yes keep us posted on how you are doing. I am in New Jersey United States waiting for it to arrive here, my doctor said it shouldn’t be much longer and I’m looking forward to starting it myself.. I wish you lots of luck and good health, stay safe

[katiewalsh]

Hi JohnSC. I’m in the States too, also waiting its approval. I’ve heard many good things about thus drug. Plz keep us posted on how you do. Congrats on being a trailblazer. Wishing you all the best! Katie

[MPort]

Thank you for sharing this and looking forward to hearing how you get on with it.

[EleanorPV]

To let you know Pegasys is still appropriate for those who don't have many side effects. I've been taking Pegasys for 4 years. It's been the wonder drug to control my PV. I've looked into Besremi it's expensive compared with Pegasys. I'm in Scotland where the last time I check it hasn't been approved (as yet).

Besremi will be great for some of those patients who can't tolerate the symptom burden from Pegasys

[MPNBlog]

Please keep us updated. I will follow with interest as I'm sure many others will too. I hope it goes really well. All the best.

For US people, note the posting by Manouche that the FDA has hit a snag and that will delay approval of Besremi in USA:

healthunlocked.com/mpnvoice...

[MPNBlog]

Hello again John. Congratulations on accessing Besremi in the UK. Was it hard to get access? What did you have to do? Does your private insurance help with the costs of the drug? Are you able to say how much it costs? I think it is one of the best options currently available for PV (if you can get access), so many might be interested. I understand if you'd rather not say, so feel free to ignore my question. Best wishes.

[IrishSarah]

Best of luck with it John!

[Woodlandgarden]

Hi JohnSC, I hope the Besrimi injections are working out well for you🤞. All the best,