Pegasys interferon shortage: Hi, Had my monthly... - MPN Voice

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Pegasys interferon shortage

Spam1979 profile image
16 Replies

Hi,

Had my monthly haematology check up the other day and my consultant advised that there is a manufacturing shortage of peg interferon at the moment so they couldn’t prescribe my normal 4 weeks supply. Has anyone else heard this or is it maybe just a Scotland thing?

I’ve to go back on Friday as they could only prescribe 1 week last time, and if they haven’t managed to source it yet I may need to move over to hydroxycarbamide until they can source more which worries me a bit. Has anyone else made this transition and what was your experience? I’m a 39 year old female with PV.

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Spam1979
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16 Replies
Cja1956 profile image
Cja1956

I have PV but have never done interferon. I also have ET so I take hydroxyurea for the ET and jakafi for PV which works pretty well. Hydroxy stopped working on my platelets after eight years on it so That’s why my doctor put me on Jakafi which helps a lot. But I’m older than you and I’ve heard on this site that doctors treat us differently due to our ages.

Hope this helps.

MPort profile image
MPort

Hi, that's sounds worrying. But I wonder and HOPE if it is a supply problem. For the past year I haven't been given my full perscription. This has only been on 4 occasions and I get the next 4 months so I need about 12 injections. I get to pharmacy after 12 and they can only give me 1 or 2. I go back when they phone me and get the remainder. I always ask them why but they have no interest in giving a reason. I will bring it up at next appointment. Let's hope it is just a blip.

Mairead

Jocko profile image
Jocko

Hi,

I am on Peg and aspirin. I get prescription for Peg every 3 months. Peg is working really well for me and I do not want to go on HU. If that were to happen I think I would ask my consultant if I could stick to aspirin until Peg was available. It must take a while for the platelet count to rise back up so I guess it wouldn't be too bad for a few weeks.

I hope it works out for you whatever you decide.

Good luck

Jocko

Susana7 profile image
Susana7

That’s really worrying... Pegasys availability is an ongoing source of concern for me in the current situation. If it were me, I would ask to take a short Pegasys break rather than transition to HU. I had no problems with my last Peg prescription in February, but am due in clinic in 2 weeks so will know more then. Ask your haemo if you can keep a couple of extra injections for situations such as this. Maybe they can source interferon from a different manufacturer or buy vials rather than pre-filled syringes, if there is more availability. Good luck and let us know how you get on. Susana x

Spam1979 profile image
Spam1979 in reply toSusana7

Well they managed to source me another 3 weeks worth and they’re hopeful that they’ll get more so will just need to play it by ear.

Susana7 profile image
Susana7 in reply toSpam1979

That is good news! I really hope this was just a temporary blip in supply. I will be getting my prescription next week so will see how things are in my area (Hertfordshire). Very glad you have your dose for now. x

SuET2017 profile image
SuET2017

The hospital pharmacy will only give me 4 weeks at a time even though I have a prescription for 3 months. I have to go back each time to collect. They only order it in the week I am due. Not sure why. If it is shortage or hospital policy?

I know there was a shortage of interferon a while ago as I was on that, couldn’t get it for a few days and the pharmacy had to source from another hospital.

I have been told that pegalated interferon will no longer be prescribed (ie not licensed) for MPNs, though those people already on it can continue. Also not sure of the reasons?

It is a little worrisome.

swimswam profile image
swimswam

I was told Pegasys wasn’t approved for ET, so I have to use the old fashioned Interferon, I suppose that could be an alternative if you can’t get Peg.

Anag profile image
Anag

Hi Spam, there are sometimes shortages. My husband’s meds were out for 9 months last year in Austria. Not funny. I always try to keep a 4 month stock at home. Just in case.

Charlieapple2018 profile image
Charlieapple2018

I was only allowed 4 wks supply and had to return to the hospital to collect the 5th week between consultant meetings. I think the hospital only has a certain number in and has to order. I didn’t consider that there was a shortage, I thought it was just policy.

lynxfluff profile image
lynxfluff

Texan here - my insurance will only fill a one-month supply at a time. But it’s not due to a shortage; they just refuse to pay for a larger stock at a time. It was like that with last year’s insurance company too. The only way to get it here is to have the specialty pharmacy mail it to you.

EleanorPV profile image
EleanorPV

I’m also in Scotland. A month ago I went to collect my 3 month prescription. I was concerned when the pharmacist said she wasn’t sure if she could get it. 3 days later I was phoned and my Pegasys was ready for collection.

clevemic profile image
clevemic

That is sooooo frustrating, that there may be a shortage of Peg Interferon. I live in the US, and have been taking this drug for about 18 months. It has worked very well for me, and I hate to think about having to go off of it. The piece of this potential shortage that is most difficult for me to accept, is that every single week, I throw away 3/4 of a vial of medicine. I take 45 mcgs and the vial contains 180 mcgs. I have been told by numerous people in the medical field that the unused portion must be discarded, and can not be reused the following weeks. Why can't manufacturers simply change the size of the vial so that there is less waste? (That was a rhetorical question. I know why---$$$$)

Spam1979 profile image
Spam1979 in reply toclevemic

I’m the same! I take 45mg and the vials are 90mg so I’m throwing half of it away every week. Drives me mad 😡😡

Tiff84 profile image
Tiff84

strange, I haven't heard of this. Although, I do live in the USA. I haven't had an issue getting mine...strange. Thanks for the heads up though:)

I would be interested to know if you found that there was in fact a manufacturing shortage of Peg Interferon or was it a cost cutting exercise by the hospital/Trust?

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