Has anyone else experienced immense injection site pain from Interferon?
I have had PV for about 10 years or so now and was just last year in Feb 2021 formally diagnosed with it. My white blood count has been extremely high for that duration. No one really looked into PV or any MPN because I looked very physically fit. It came to an head as I aged. Currently in my mid 40's.
I started Pegasys about 2 months ago and experienced extreme pain where I injected myself on my first dose. At first my Dr thought it might have been infection but it happened again during me second dose. There was a 2 day delay and then redness, tenderness and extreme pain. I have had other symptoms like chills, muscle pain, clouded thoughts, depression, lack of energy, etc. However my main concern is the pain.
We stopped treatment after 2 doses (500 mg) becauses the pain was just too unbearable. It took me over a month to recover and last week I started on Besremi (50 mg since I am still taking HU). My Dr advised more than likely it was the dosage amount. After 2 days I told him I was expecting to feel the site pain again because it is still inferon. He gave me better pain medication vs otc that was initially taken during Pegasys. The pain is here and it is a little lighter. A 7 vs the 15 I had prior and the pain medication is making it tolerable.
I want to stay on Besremi because of the remission capabilities that no other drug offers.
My question is has anyone else gone through this and am I having adverse reactions to Interferon itself? Thank you kindly.
Sam
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S_anth
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Your dose was each at 250 of PEG, is that right? That is a huge dose for MPN treatment, it's safer to start much lower, 45 for example, and increase slowly. So your symptoms are not entirely surprising. So the good news is there is a solution, using more common dosing as your Dr says.
I'm on Besremi, and so far have never had pain or redness at the injection area. I am at 140 mcg now, and do get various other side effects. I think Bes uses a smaller needle than PEG which may help. Depression is a known adverse reaction to IFN for some, but the smaller dose should be helpful.
On the injection site pain, have you tried the other area it can be injected? It can go in either the stomach or thigh. I've changed to the thigh to reduce abdominal discomfort it caused in the stomach.
My dose was 500 mg each (Pegasys) once a week. He advised that was the prescribed normal amount. The 50 mg has still caused a good amount of pain. I am just hoping that it is something that will go away with time of use or at least tolerable with pain medication.
I forget where I read that some patients were not able to tolerate the side effects.
That is strange, the entire PEG syringe usually has only 180mcg in it, and this is the max dose that was used for Hepatitis (PEG's approved use). So you would need more than two full syringes to get to 500, or a special preparation of it. I'd expect very severe possible adverse effects at that dose. Even at 180 to start adverse effects would not be a surprise.
The Bes syringe does have 500, but that is almost never given as a starting dose, we get only 1/10th of that to start as you are now. It's possible that your extreme exposure to PEG has sensitized you the smaller Bes dose (just my guess, no data to show this) If so you should hope to get more used to Bes at its normal dose.
Nice to get it figured. With that, we still know your dose was quite high, "the whole bottle" as I call it. At 50 in Bes you're at an equivalent well below the 180 in PEG. Best odds you'll do much better on this path, look fwd to your good result.
Some members here are holding good blood control (CHR) on 50 or less of Bes. Even if you need more, increasing it gradually is the more comfortable way.
I started on Peg IFN 4 weeks ago my syringe holds 90 but Doc told me to start on 65 and see how I go, side effects, tolerance etc.
it does leave me with red marks that seem to take weeks to fade (I can still just about see my first one from 4 weeks ago) no pain though, although quite severe side effects, chills initially, then bone pain after about day 2:, fatigue all the time but also insomnia quite bad now. I have started a diary now as I am trying to work out a if a pattern forms on certain days after the injection.
In answer to your question though, redness at the site area yes but no pain from it. Hope you get sorted x
Interesting on the red. From prior posts it seems not unusual to have that with PEG. I've not seen as much on the forum with Besremi, can't say from this if this difference is real. But the extreme injection area pain S_anth reported does seem unusual for either IFN.
My Dr predicted I would get bone pain from IFN, so far it's actually better than before starting Bes. Maybe we'll hear from others on both types to hear more. I do have some insomnia I told Dr about; not severe so far. I usually get slightly dizzy on inj day.
My dizziness is quite prolific from the injections. I did have lightheadedness via symptoms in the early days but from starting the injections I suffer quite a lot. I would say to the point I stumble (of which family friends notice) and it does affect my day in respect of not wanting to leave the house when like this!
As for the insomnia well, I am in the Uk and writing this so hence the time of 4.47am and been awake since 1.30am 😳😳😳
My symptoms have changed since I started Peg for the short time I took it.
Lack of Focus. Kind of seems like I've been in a fog.
Decrease in energy
Night sweats
The site injection pain
Depression but I think this the pain and my inability to keep working out. I lost all my routines.
Fever
Chills
Numbness in fingers. Happen 3 times.
I lost 5 lbs within 2 weeks.
Besremi so far has been the site pain, fever, lack of focus and headache (could be from hydrocodone). I took my shot on Thursday and as I predicted my pain was few days later. I was hoping it would be minor.
You may not be able to tolerate interferon's from the mention of your reactions. Like you, I'm extremely fit and love to workout. I've been diagnosed with PV 20 years ago at around age 43. Turned 60 and tried PEG at a 45mcg dose. Had severe liver ALT increases so dropped down to 22.5mcg dose. On that low dose my liver went back down to normal levels but I still had pretty severe depression, brain fog, flashes of light, dizziness, achy joints and trouble with sleeping.
My MPN specialist agreed that this low dosage wasn't worth the adverse side affects I was experiencing plus my quality of life was suffering. Could hardly do my normal swim workout. Doc recommended 2 aspirin a day with phlebotomy as needed. This regimen so far has worked great for me. Understand though, I've been considered low risk....have no family history of clotting and have no other medical problems. Other side affects from PV with high platelets and WBC's has been minimal but I believe the daily exercising has been my best treatment. Best of luck to you! Kerry
I am hoping its something my body can tolerate. The remission capabilities of the drug is very desired. If I can not tolerate it then I will be back to HU and phlebotomy which I have been ok with.
Has your Dr discussed the hydrocodone effects? It seems to have various such and as you say might be part of the issue. Is the hydrocodone a long term therapy you're on?
As ritaandscooter1 notes, you should be monitoring your CMPs (liver etc) This is a top concern as IFN is started. Do you have any results since starting either IFN?
your liver numbers are ok. They look esp at ALT, AST, and biliruben. If bili is high it's a particular caution, with no allowance for high AST, ALT, but with normal bili as you have the slightly raised ALT is ok, esp considering the high dose you were on. Of course your Dr is the actual judge of these things, but us being informed to know what to ask is good.
Thank you. I believe I had my liver checked for damage in June and it looked ok. I appreciate this group. You guys/gals are very helpful. Thank you very much.
Taking care of your stomach with checking your microbiote or an proper antiinflamatory diet works for depression and mood. Think about your immune system is burning and you must stop it with your lifestyle. Check your body in 360°.
I started on 90mg Peg (every week) a few years ago and always got a reaction at the injection site. I used Emla cream which was very good (recommended by some good people on this forum).
Interestingly, as my dose went down gradually to my current dose (45mg every 3 weeks) I find I get little or no reaction at the injection site. I’m not sure if it’s because I’ve got used to it or the dosage was lowered but either way it improved massively over time.
Everyone is probably different in their reactions & Im sure that your situation will improve in time👍
I take the 180 full dose of pegasys each week. I have a nice round red spot a few days after injection that last a week or two
I take my shot right before bedtime with 1 Tylenol for arthritis (600 mg I think) and when I wake up I take another Tylenol arthritis in the morning. I started at 90 and a few months later rose to a 135 dose and later to 180. Starting at 180 seems hardcore for the first dose, especially since there are known side effects for many people. I experience some sleep issues usually night 3 and 4 after the weekly injection. I try to drink extra water all week and get out for an extra walk. I did adjust the day of the week I took it so the sleep issues fell on the weekend. I am 53.
Sorry to hear about your issues. Good luck with Besremi.
Took 100 mg of Besremi on Thursday of prior week and there was a 3 day delay before the pain. This time it was very mild and only lasted 3 days. I used a lidocaine patch and tylenol and it worked great. My Hematocrit is 48% so we will be increasing dosage along with a phlebotomy.
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