Miracle of Pegasys : Hi everyone I had my latest... - MPN Voice

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Miracle of Pegasys

hall2 profile image
13 Replies

Hi everyone

I had my latest appointment today and I've been on Pegasys for about eight weeks gradually inceeasing to 90mg fortnightly and already my platelet count has dropped from over 900 to 640! I'm so pleased and so grateful for this on the NHS.

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hall2
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13 Replies
Ebot profile image
Ebot

Brilliant news. Yep these drugs can be real miracle workers. Long may they continue to do their best!

EleanorPV profile image
EleanorPV

And long term they are even better

Mica11 profile image
Mica11

If we must take meds, it's great news they are doing what they are supposed to!

welshhuw profile image
welshhuw

That's excellent news, I am very pleased for you, for some people Pegasys seems to work really well. I started Pegasys in March 2019 at 45mcg weekly, increasing to 65mcg, within 8 weeks my platelets reduced from 1220 to 395, brilliant result and no side effects. Unfortunately, Roche, the company that produces Pegasys will discontinue production by 2026. Hopefully by then the new Interferon (Ropeginterferon - Besremi) will be available to us or may be an even better treatment.

Susana7 profile image
Susana7 in reply towelshhuw

Hi, that is worrying. Where did you hear this? X

hall2 profile image
hall2 in reply towelshhuw

I didn't realise they were going to stop producing this, I'll ask about it at my next appointment!

EleanorPV profile image
EleanorPV in reply towelshhuw

I have found many worrying rumours like this about Pegasys, all have been proven to be false. Where did you get this information? Besremi is licensed for EU use i haven’t heard any UK patients being prescribed it as yet. I’m sure this time will come soon

Susana7 profile image
Susana7

Delighted for you! Pegasys has been wonderful for me too. X

welshhuw profile image
welshhuw

I worked for Roche in Clinical Research for 15 years before taking early retirement 4 years ago. I also did some occasional consultancy work for Roche, so I still have many contacts in the company. Pegasys was originally approved for the treatment of Hep C. I understand Sales in that indication have been declining over the past few years as newer, non-intererfon treatments have been developed. Pegasys for the treatment of MPNs is prescribed 'off-label' , and I suspect accounts for a relatively small percentage of sales. Pegasys is very expensive to produce and with the new & better interferon Ropeginterferon shortly to become available, I assume this has also influenced the Roche decision to phase out Pegasys by 2026.

hall2 profile image
hall2 in reply towelshhuw

Thanks for the information!

hunter5582 profile image
hunter5582

Great to hear about your positive experience. I turn out to be hydroxyurea intolerant, so if I need cytoreduction again - Pegasys may be the choice for me.

conno61 profile image
conno61

Your lucky you can get it, lots of us can't and are just given the crap that is hydroxyurea.

hall2 profile image
hall2

Sorry to hear that. Are you in the UK? If so which area? It is a bit of a postcode lottery!

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