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.
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.
Good luck.
Hi Round the World,
Thank you so much for your reply.
I will definitely follow your helpful advice and check previous posts.
I hadn’t really been specific as to where I was injecting, some above and below my tummy button. I’ll make sure I aim better next week 🤪.
I will try the cool bag next week too. As for fluids, I seem to be constantly drinking loads. Mainly cordial and water, a pint at a time.
I don’t get any itching so I’ll hang fire on the Aloe Vera gel, but I’ll bear it in mind for the future.
I’m sure my MPN nurse said ‘don’t bother about the air' but I’ll give that a go next week too.
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.
Take measure 3 finger left or right from your belly button for injection site.Change the place every time to right or left.
If your belly fat is thick enough, you may jab at 90°, but if yours is thin, then inject with 45°.
It is intramuscular so it doesn't matter if you inject with smal air inside the needle.
Cooler pad may use for bruising.
Whish you all the best
Cheers
Hi William-Indo, thanks for your helpful reply. I’m going to try my thigh next week. Fingers crossed.
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!
Hi There,
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.
Not much help but you're not on your own. 😀
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.
Hi Greengolfer.
Great advice from everyone here.
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.
Wishing you well.
hi Mrs Average, I was advised to do mine at night by the MPN nurse, that way you sleep through any side effects. I do mine on Tuesday and this week was my 5th. The haematologist doubled my dose from 45mcg to 90mcg. I think my body thought ‘what the hell is that’. The next day was awful, banging headache and so fatigued all day. Today was slightly better, fingers crossed for tomorrow.
Hi Greengolfer,
I am on Besremi and it’s the same with me. I inject every second week. Even after 6 weeks, I still see a bit. My symptoms of tender joints got worse and worse with every shot until I had to stop. My functional doctor said that the polyethylene glycol PEG in the Besremi was probably causing the symptoms, that they may not be from the Besremi. From the last seminar I did, I think the Pegasus half-life is a few days whereas the Besremi half-life is about 5-6 days. But the redness remains for longer. Dr. Said PEG gets stuck in the body and accumulates, causing immune reactions.
We’ll never know if they don’t invent an interferon without the pegation. 🫤
my problems with my joints are becoming severe again, and I am now only taking the minimum dosage every 3 to 4 weeks. There is no real alternative for me since the HU. causes severe neurological symptoms with me and the anagrelide has caused some permanent damage for me. I’m just trying to keep my body as healthy as possible and keep hoping for a new drug soon. Basically doing OK Hope dies last! 🙂
hope to have helped Anag
Hi Anag, I’m so sorry you are suffering so much. I do hope something turns up sooner than later. I couldn’t cope with HU which is why I am trying Pegasys. I’m hoping that the increase in dose gradually decreases the side effects. When I first started with it I was on 45mcg and the first week I was really bad with headaches and fatigue , the 2nd day after not so bad. The following week symptoms were not so bad. The third and fourth weeks side effect free. I’m hoping this will be the case with the increased dose.
yes always causes red patches but if you leave needle in a few seconds after fluid finishes & pull straight out it reduces mark.
I still get patches slightly despite only inject monthly. But slight pay off for helping our health. My thoughts are that inflammation is caused for any slight interference with our complaint. I get horrendous reactions & redness to any insect bites. I use ice to numb the area before I inject & it helps with less redness . Julia , Exeter . 👌UK
I used to inject full 135mcg weekly with lots of mistakes
Am now on 67mcg fortnightly
Couple of things I was advised by mpn-mate and others
Take syringe out of fridge 30 min before injection
Push plunger to get air out fully from syringe
Inject in your fatty tissue of stomach @45* on the side (pinch and release after injection)
Alternate sides between injections
Site is usually pinkish and more visible after shower but not itchy
As for headaches/migraines, I had them for decade before ET calr2 diagnosis ,and for 5 years on Hydrea and still now on Pegasys
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