Email to the CEO of the MHRA - please also email this lady

[Loubprv]

Dear Dr Raine,

Please accept my apologies for contacting you directly. I am 67 and was diagnosed with polycythemia vera 12 years ago. I have since been taking 1000mgs Hydroxicarbamide daily. Unfortunately this drug is now causing multiple basal cell carcinomas and hair loss and I need to change medication.

Having done some research I read that Besremi Ropeginterferon Alfa-2b has been deemed safe and efficacious in the US ( as of 15/03/2021) as it has also in Europe.

I wonder therefore why this drug is not licensed for use in the UK?

I realise that we PV patients are very small fish in a giant sea, but PV is a chronic lifelong disease, and is really not to be ignored or trivialised in favour of better known or more common cancers. It does indeed come along with many unpleasant symptoms.

I and hundreds of other PV patients would very much appreciate your prompt attention in this matter, along with your response.

Thankyou so much.

Yours sincerely

Etc.

This lady’s email address can be found on t’internet via CEO EMAIL.

Please take a few moments to contact Dr Raine. The mor of us that she hears from perhaps the quicker the MHRA will act.

[Inca]

Well done Louise! Me too ,lots of carcinoma s on Hydrea 9 yrs ,changed now to Jakavi.

Why are we ignored ? The stress of these side effects of the drugs is devastating ,esp to us women.....& the surgery needed. My consultant did tell me that Hydrea does cause skin cancers...the Jakavi is meant to be better.

Will pm you.

Kind regards Sally x

[Loubprv Volunteer in reply to Inca]

Thanks Sally xx

[Wyebird]

Love your letter, I’ve ET would I at sometime also Beirut from this drug?

[Loubprv Volunteer in reply to Wyebird]

Do you know? I m not sure. But the more we put pressure on our specialists the better. X

[mhos61 in reply to Wyebird]

That would be a yes. A forum member (dovme) who lives in Berlin has transferred to Besremi from hydrea. He has ET Jak2+.

[Hidden in reply to mhos61]

Hi

Actually l didn’t despite promising assurances as they are awaiting trial results. For now l am on Peg but doing well despite some early side effects. I am hoping to get on to besremi when and if they agree. Here besremi is currently only widely used for PV patients

[mhos61 in reply to Hidden]

Oh, that’s a shame, hopefully somewhere down the line then?Glad to hear you’re doing well. What were the early side effects you had with Peg?

[Hidden in reply to mhos61]

Thanks! My first side effects were muscle/bone pain mainly in my shins and it lasted about a week after the injections. Paracetamol helped. Fortunately it doesn’t happen now. It was difficult

I also had fever/chills starting a few days after the first few injections lasted 24 hours. This also doesn’t happen now or is very mild. The only other symptom l still get is a cough starts two days after the injection and lasts a few days

It might be that for the first two months l was taking both HU and interferon. The switch from one to the other may have contributed to stronger side effects?

I think it takes some of us a while for the body to adapt

[mhos61 in reply to Hidden]

What dose are you on?

[Hidden in reply to mhos61]

90mg every two weeks.

[mhos61 in reply to Hidden]

Hope it all works out well for you. X

[Hidden in reply to mhos61]

Me too - worth trying regardless!