I changed to Pegasys interferon 5 weeks ago and I seem to be coping with it quite well.
I’ve had headaches daily since diagnosed in December 2023, these subsided and for the last 2 weeks I was headache free. However the last few days they have returned.
I injected my 5th dose last night and I now have 5 red patches in different places on my stomach. No itching or soreness though.
Is this a common occurrence, should I be concerned and any suggestions to alleviate this would be appreciated.
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Greengolfer
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Hello Greengolfer. I still have red marks from previous weeks too. They gradually fade but each time I inject temporarily show up a bit more again (like old bruises in between injections). Worth discussing with your haematologist / nurse but it sounds as though it is something others have as well.
If you search previous posts for 'Minimising reaction at injection site?' lots of people gave me good advice recently. The 'Related Posts' section at the top right of this page also helped.
My own reaction seems somewhat less since injecting in the lower part of my tummy rather than above belly button line + making sure there is no excess interferon on the outside of the needle. I hadn't realised I should tap out any excess air (just gently tap on the side while holding the needle vertically and the air escapes through the top) - something I spotted on the advice sheet. Last week I did that before injecting and had the smallest reaction so far; could be coincidence though. (Sorry if all this is obvious to you already!)
I made the mistake of injecting a bit too close to my belly button one week and suffered as as result - I used an Aloe Vera gel (bought over the counter at the pharmacy) to reduce itching and a cool (not frozen) gel pack - helped reduce the inflammation more quickly.
Re. the headaches - plenty of fluids on the day of injection and the one after have helped me with this and tiredness I think.
The air could well be a red herring. Above belly line may be ok to do - just definitely didn't agree with me and the nurse suggested the more 'insulated' lower bit might react less and she was right
Know what you mean re. the drinking; my sugar intake has gone up as I try to make the water a bit more interesting with cordials too.
I’m taking Besremi, not Peg, but I was also getting red, itchy, burning circles when I injected in my belly.
I switched to my thighs and get no reaction at all. Can’t even tell where I injected. Not sure if thighs are an option for Peg, but if you get the ok try it!
I am exactly the same! Started 5 weeks ago, have 5 red patches, not painful, just noticeable. The headaches are also the same for me. When I spoke to my nurse and consultant they both said it's normal and nothing to worry about.
Good morning Otis23, I have now got 5 red patches too. Not itchy or painful either. On Tuesday I took 90mcg, consultant increased my dose from 45mcg, Wednesday was the worst day of headaches I’ve had since I started this awful journey back in December. Consultant also said it could be the PV that’s causing the headaches. I was told try Paracetamol, that didn’t even touch them at all. He did say that if it continues he will refer me to a Neurologist. Hopefully 3d day after the jab I’ll have a better day.
I have been on Pegasys and then Besremi for almost two years and have never suffered from redness at the injection site. Several have already offered good advice, but I would like to add that for my first injection I was instructed by the nurse to keep the needle in place for about 10 seconds after injecting the liquid. Not sure why but so far all has been fine. I inject in the lower belly and alternate sides.
Thanks for your reply, the nurse also said to leave the needle in for a few seconds afterwards. She said it was to stop any of the liquid coming back out onto my skin. I also wipe the injection site with an antibacterial wipe after removing the needle.
I've been on Bes for over a year and just started injecting into the thighs. Grateful for the advice and ideas above. I am frustrated because I have to empty most of the fluid onto scrap paper over the sink, as my dose is a tiny 50 mcg. Instructions say to do this needle straight up, but then the stuff gets on your hands. I wear a glove now and only hold it straight up near the 50 mark so I don't accidentally under dose. But still there is a bit of a mess. I have an intensely itchy area and a bit of inflammation at my wrist, and I wonder if some Besremi dribbled past the glove and landed there. Or it could be a gardening issue, I guess.
A separate question about PV and interferons: anyone have strange skin reactions? The skin just peels off my thumbs every few months. Medicine is not touching there, I'm sure, at least on the left hand. I'm not sure whether to seek nutritional, dermatological or other help for this. Creepy.
By the way, when I asked the pharmacy (or perhaps it was the manufacturer, as they check in a lot on side effects) about sun sensitivity while on Besremi, they said it was not one of the listed problems. A Mayo forum discussion leader said the opposite, but I'll take the pharmacy's view and use normal precautions.
Hi Ovidess, thanks for your reply. I don’t get any skin issues apart from the red patches and headaches. Maybe an idea to mention to your haematologist and see if he has come across this before. Just a thought.
I take 45mcg once evey 2 weeks. I prefer to unject in my legs as I found my belly a bit sore generally with the injections.
I am getting some itchiness but not consistent in a wide oatch around the injection site, but it is mild and not bothersome. I did notice that going into the sun ( by the pool) did cause a big red patch and so I will be careful in the sun going forward.
If I am taking the injection in the morning I will take paracetamol at the same time, as I will get a banging headache. If I am taking at night I can sometimes sleep through.
I also get migraines and I take paracetamol & codeine, but only for short periods.
Overall though the interferon is doing the job for me, so pretty happy with it.
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