With the world wide shortage of Peggy not likely to be resolved until mid next year does anyone know what is happening to help thenusers of this drug?
It would help if Nice would allow the temporary usage of Besremi for those who are currently prescribed an IFN.
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Hi @DougyW good question, have you or anyone you know experienced the shortage?
I will copy your post to Blood Cancer UK to see if they know anything @BloodCancerUK-SupportTeam
Can anyone else share their experiences?
Look after yourself and a question that others might like an answer to as well
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I haven’t as Ive gone from weekly to 4 weekly but I know others who cannit get replacements at the moment.
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Good afternoon @Erica and @DougyW, and anyone else dipping in to this thread.
The, at the time, looming shortage of Pegasys, was one of the reasons given to me at my last Clinical appointment in mid-August, for the increase in my dosage from 90 to 135mcg, but to go to 3 weekly instead of fortnightly jabs. I have to say that the knowledge of a shortage does cause some disquiet and is a source of additional stress, something that we Myeloproliferative neoplasms (MPN) sufferers already have more than our fair share of to deal with.
I think the part of this that makes me scratch my head the most is that the “new” company, who have been granted the licence, aren’t/weren’t set up to manufacture Pegasys from when the new licence took effect. It can’t be that they were informed on a Friday evening that they were to be the new supplier from the following Monday! I don’t know how much time there was between being informed that the licence was coming their way, and the start of that licence but…surely it wouldn’t be beyond the bounds of reason to expect an overlap of suppliers rather than a “break” between.
Rant/vent over!
Fortunately today’s rain will help too cool me down as I can just stand outside for a few minutes for a good drenching!
Take care all, stay safe, carry on smiling and get ready to treat the Pegasys in the same way that toilet roll was 4 years ago, and horde!
Best wishes,
Jimbo165
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Hi @DougyW
Thanks for your comment.
We have information about the shortage on our website here: Interferon supplies for people with MPNs (Pegasys) - important information | Blood Cancer UK This page will be kept updated as and when we receive new information.
As the information says, if you are worried, speak to your hospital team. You don’t have to wait for your next appointment, and it’s worth going in prepared with any questions you may have. Also, just to highlight - don’t change your dose of interferon without speaking to your hospital team. If you typically use less than a whole syringe of Pegasys, don’t reuse what’s left – it is not safe.
If you or anyone reading would like to talk any of this through, as always, please do get in touch with our Support Services team: Blood cancer information and support by phone and email | Blood Cancer UK
@Jimbo165 It’s understandable you are feeling additional stress after this change. Remember that it’s OK to go back to your team to talk it through if you have any questions or concerns. Take good care of yourself and enjoy the rain! I also think a little dance in the rain helps me with strong emotions at times! 
Best wishes,
Ali
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