Interferon

[VTAR24]

Hi all I managed to source some interferon thankfully as I'm in Ireland and shortage is still bad I have been changed to 135mg a month now instead if 9omg every 2 weeks with this shortage I am due to give this injection tonite but I have a question I'm all week with a head cold as in cough not chesty and scratchy throat I am a good bit better now thankfully but does anyone know if it is OK to still give injection if not fully over this cold ? Tks to all in advance

[hunter5582]

I have never been instructed to stop the interferon when ill, including when I had COVID. Suggest that you confirm the answer with your hematologist. Your MPN treatment team will give you the best answer.

[VTAR24 in reply to hunter5582]

Tks again

[Jocko]

Hi,

I’ve never been told to not inject for any reason.

Out of interest I have gone from 90mg of Peg every 3 weeks to 90mg of Peg every 5 weeks.

My counts were a nice 207 at every 3 weeks over the course of 2024 that only increased to 220 after reducing my dose.

I think not having as much Peg is fine so long as your counts stay under control I.e. 500 and below.

During this shortage you can use this to see how dependent you are on the drug. It may be that you don’t need as much or maybe you do. That aids your understanding of what you need.

My advice regarding injecting whilst you are ill is if you are unsure speak to your medical contact.

If they can’t help and you don’t want to take it whilst you are ill then don’t. Without a professional opinion I think you should do what feels right.

Good luck - get well soon

[Threelions in reply to Jocko]

I do find it interesting, during the peg shortage, how some (including myself) , have had extended gaps between usage yet are still reporting only slightly increased counts. Going forward I wonder if it could prove to be a big saving for the NHS?

[Jocko in reply to Threelions]

Indeed exactly what I was thinking. It’s like one big experiment. I’m thinking under normal circumstances consultants wouldn’t want to take the chance of reducing meds for patients however now they have an opportunity to get the data to prove the theory one way or another. Even if they get back to normal I’m thinking there’s not much benefit of myself going back to my previous dose.

[Leveret20]

When I was on interferon, I was instructed not to take a dose while I had an infection and/or a temperature - to wait until it had cleared and then restart. That included at different times a chest cold and a head cold that did not raise my temperature.

[Greengolfer]

Hi VTAR24, I’ve been on interferon for many months and have never been told not to inject for any reason.

If you feel uncomfortable for any reason I would suggest you get in touch with your Haematology team, maybe like me you have a specialist nurse who could advise you.

Good luck going forward, I wish you all the best.

[VTAR24 in reply to Greengolfer]

Tks so much

[Ovidess]

Once my numbers on Besremi were a bit more normal, I was told there was latitude for postponing injections because of illness, or even because of a trip. It would be a great question for a specialist and dependent on where one is in fighting PV no doubt.

[Mieshie]

Not the same as having full blown head cold but over a 3-month period late last year I reacted to vaccines more than a sore spot on arm. During this time I also switched from 90 mcg peginterferon to same dose though every 2 weeks. The reactions were different intensity gastro and nasal w/sneezing to COVID vaccine, flu vaccine and both shingles vaccines. Not longer than 3-4 days each time but inconvenient and uncomfortable for sure. I checked with hematology before and during this adventure. She said to keep getting the vaccines and unless I had a violent reaction to keep going forward with peginterferon. The dose nor the timing change didn't seem to make any difference at all. Word of caution is to be extra careful about nourishment and hydration as gastro and nasal being irritated can mess up appetite and motivation. Twice I have delayed an injection due to logistics issues and with hematology alerted was advised not to worry. Peace of mind is to check with your care team.