Interferon supplies

[Fivecatsandcounting]

I wonder how low the supplies of Interferon are getting now. My prescription was short last time and today I went to collect again (Interferon 135) and it hadn't been processed at all due to the 'National Shortage'. This was a week after request. I was allowed 2 syringes today to see me over. I checked the batch against the couple I have in the fridge and it matches the batch I was issued last time, so it seems the supply is really being stretched out. I get my meds via my local hospital but my care is at Guys .. I've emailed them to let them know the situation. Just thought I would share. Is anyone else struggling to get a supply now too?

[hunter5582]

I hope they will be able to switch you over to Besremi before the Pegasys runs all the way out.

Wishing you success.

[Fivecatsandcounting in reply to hunter5582]

Thank you Hunter! I think they are trying to get permission to switch some UK patients to Besremi so fingers crossed for those lucky to be accepted!

[light in reply to hunter5582]

Hi Hunter, just to ask you about Besremi, side effects, etc..

[Scarlett500]

I saw my consultant today and we switched to fortnightly 90 mcg doses from weekly 45mcg to use up the whole syringe. He was aware of the shortage but thought my area( Merseyside) was ok. Im at an MPN voice conference today in Liverpool so Im sure that the shortage will be discussed.

[Fivecatsandcounting in reply to Scarlett500]

Thanks Scarlett it would be interesting to hear about that. It does seem slightly different via each hospital trust. I can't switch my dose to fortnightly at the moment as it has taken me a year to start to see movement in numbers (although not reds). On 134mcg weekly at the moment but luckily that is 1 whole syringe measurement. Wishing you well and enjoy the conference I bet it will be so interesting

[beckyluck]

i spoke to my consultant two weeks ago and she said for me not to worry (I am in Lincoln), apparently I am priority for interferon, I had a call from the hospital pharmacy yesterday wanting to deliver my meds and they told me they couldn’t give me all the meds and that I would need to speak to my consultant as they are discontinuing interferon. Very confused!

[Fivecatsandcounting in reply to beckyluck]

Hi Becky, I'm getting similar feedback. The pharmacy seems to be controlling the issue of meds. I did ask a while back about delivery and they said they could as a fridge item. I'll ask again as that would help greatly rather than fight the hospital every 2 weeks for a supply. Good luck to you going forward. You take care

[beckyluck in reply to Fivecatsandcounting]

And you too 🙂

[Poppy6060]

Hi I am in Essex and I couldn’t get my injections two weeks ago I have to go onto hydroxy which I am not happy about and did ask about Besremi and was told it’s a old drug which they don’t like using now was offered Ruxolitinib but can’t have it at moment has had covid a few weeks ago so need to wait 10 weeks and would need a shingles vaccine . It’s all very upsetting I am about to start pills this weekend feeling anxious hope you can get some answers keep us updated

Poppy

[Fivecatsandcounting in reply to Poppy6060]

Oh that sounds stressful 😞 poor you. I am in Essex too and my prescriptions are issued at Broomfield. My care is at Guys though (excellent). I wasn't sure that we could go in to Rux unless we had been on hydroxy first. It doesn't feel that everywhere is joined up on the supply and issue which is worrying in itself and seems to change. I hope that you feel better soon a s can get sorted (hopefully still on Interferon)

[light in reply to Poppy6060]

Hi, so sorry about your unfortunate experience with Pegasus and Hu. I would not like going back to Hu. It was very bad to me. Wishing you well.

[beckyluck in reply to Poppy6060]

Oh dear that is a shame and must be very upsetting for you.

I was taken off of Hydroxy because of my age and really don’t want to have to go back on it! I’m totally in a good place with Interferon and am now starting to stress about changing again. Hopefully this will all be resolved very soon, keeping everything crossed!

[Hidden in reply to beckyluck]

I feel exactly the same, I have been on Interferon since January 21, I have MF, I am due my 3 monthly appointment at QE hospital on 7th October so not sure what will happen, I take 90 mg weekly. Good luck everyone.

[Fivecatsandcounting in reply to Hidden]

Good luck to you 🤞

[EPguy in reply to Poppy6060]

to Poppy6060:

When they say "it's an old drug" they are likely confusing it with the early interferons. These were Intron A and Roferon. Besremi is very new and more similar to PEG than these old ones. You should be sure they know this so that you're not losing an opportunity for the wrong reason.

[Poppy6060 in reply to EPguy]

Thanks EPguy it’s all so confusing we made our choices now we have to start all over again I will be going back to hospital in eight weeks I will be asking again Poppy

[EPguy in reply to Poppy6060]

See my new post in case you want lots of info on which IFN is what for your next visit.

[zvinkovic in reply to Poppy6060]

When they said it's an older drug, they were maybe thinking of even older drug, busulfan, which is not used for MPNs anymore. So, maybe it's worth asking again for Besremi, which is very new drug.

[Hidden]

Thank you x