Hi all hope every one is well
Had my first peg yesterday 45 around 2 pm
At 8pm had to go to bed felt ill flu symptoms aching all over hot and cold didn't sleep well
Got up around 10 am and have a fuzzy head had so paracetamol.
Hoping next one isn't so harsh
While I did not experience the flu-like AEs with PEG, it is a fairly common reaction. Hopefully your body will adjust before too long. You might want to take the paracetamol as prophylaxis rather than waiting for the symptoms. I have had some itching/rashes due to the IFNs and have adopted a daily Claritin to manage it successfully.
All the best moving forward.
Thank you will dry this next jab is next Monday x
I felt when same when I started on Peg, but after a short while, about a month or so, I hardly notice anything now. I sometimes feel a bit tired the day after the injection, just normal tiredness not fatigue. Hope you feel better soon.
Thank you x
I have to say I never got and still don’t get such symptoms on Peg. I do find that it made me dehydrated however, and I now make sure I drink lots of water on the day I take it.
Hi JeniMac,
Sorry to hear that, I remember I was very similar when I first started on Peg. My advice would be to do the injection 2hrs before you go to bed, because the symptoms tend to start about 2hrs after you've injected. You may feel a bit fluey/snotty and tired the next day, but after 3 injections I found I was tolerating it much better and since then I don't get particularly bad side effects after doing the injection, so stick with it and hopefully it'll be the same for you!
Hi JeniMac, I had my second one last night. With the first one, I was fine for the first day but had a bad shivering session during the second night. Now I am waiting to see what happens... Nurse said to take paracetamol but to alert them if symptoms persist for longer than a day. Good luck, it is a discovery journey!
Thank you x
I was issued my Peg yesterday at hospital . It was a battle to get it as not my usual haemotology Dr & this one was trying to push me back onto Hydroxy which I reacted badly on & weight loss. I was eventually prescribed peg interferon Alfa 2a. However it’s 90 micrograms. I read on this site that most start on 45 which I told the Dr . Not sure she was happy with me commenting however she agreed to put 45 on prescription so I will inject half syringe. No instructions how to give it myself but I have read up on it. I expect the cost of the drug is the problem however my previous Haemotology Dr had agreed on me having it. I hope this is the correct one for ET. My platelets are 540 currently aged 68 no symptoms. I asked to leave it longer but insisted I needed to start medication again . Julia UK.
Hope it works for you. I was on hu for 12 years. Changed haemotoligist as felt I wasn't getting anywhere as I was taken 3000mg a day 6 tablets. Went on to Anagralide but didn't help. Have had more tested BMB. Now I have been diagnosed with Pre Myelofibrosis my platelets count was 1028.so now on Pegysas x
Sorry to hear about your reaction. Drink loads of water and I hope it improves for you and the next one
I also experienced those symptoms, when I started Peg. I am now 3 months in and I barely notice any side effects. I do take some Tylenol with my injection and also take a daily Claritin. I am still on 45mcg.
Hang in there! It should get better!
Hi JeniMac, I totally agree, and can't emphasise too strongly, the need for extra hydration. This Friday is my Peg day and I am already refilling my pint glass regularly all day with water. I think it will be injection no 36. So, at one 45 mcg dose every two weeks, that's well over a year, now. And since 36 is an even number I know it will be the second use of the syringe, with a fresh needle.
With enough water, I don't get headaches afterwards and with even more water, I dont get dry eyes and a dry mouth either. I have been lucky not to get the fluey symptoms, or that might just be due to my regular high-strength vitamin C .
I hope it all goes well for you. Warmly, Daisy
Thank you I need to drink more water I know I'm terrible. Hope you are well. We don't use same injection we throw away excess. Hope you stay well ❤️
And, JeniMac, it doesn't have to be just water. I make organic vegetable broths and soups too. Freeze them so i have plenty on tap for Peg days.
I'm afraid i can't bring myself to waste all that Peg. At least all the while it's keeping my platelets under control.
In uk we are not allowed to use excess. I drink lots of tea not sure that counts x
If it's herb tea, then that would be excellent. I'm afraid there's caffeine in regular tea, as well as coffee.
I'm in the UK too and I have only ever been told that it is "not recommended" to get more than one dose out of the same syringe. However, it was a phlebotomist who gave me my first supply of extra needles. Now I get them on Amazon.
hope you feel better on this soon and move past side affects
X
Thank you x
Hi
Not knowing what PEG is I went online.
A derivative of petroleum!
Um!
Used in constipation.
I use COLOFAC 135mg. 1 full glass in morning with a pill on an empty stomach.
If necessary you can have 3 so before each meal by i hour.
It works by relaxing your colon and bowel. It softens and makes an easy glide.
Otherwise kiwifruit in bowl of Harrington's imported organic full grain oats works in water.
Please explain initials and terms ...... thanks.
cheri JOY. (NZ)
Hi Peg is short for pegylated interferon it's a vaccine given for MPNs x
Well I knew that Peg helps the immune system, but I'd never really thought of it in terms of a vaccine before. And here is me saying I've not been vaccinated against covid !
You're right, it is from petroleum:
"Polyethylene glycol (PEG) is a polyether compound derived from petroleum with many applications" These include a medical grade of Peg.
en.wikipedia.org/wiki/Polye...
It's even used in the Covid vaxes:
"A PEGylated lipid is used as an excipient in both the Moderna and Pfizer–BioNTech vaccines"
Here is the one we care about:
"When attached to various protein medications (IFN in our case) or drug carriers, polyethylene glycol of suitable length slows down their clearance from the blood"
PEG for us refers to Pegasys brand interferon. Adding Peg to IFN has made IFN useful for our MPN condition. Another pegylated IFN is Besremi, but it's not usually called "PEG"
Hi
Goodness gracious really.
I know petroleum jelly in our ran of the nill ointment for healing is used extensively around the world.
Yet another series of INITIALS what does MPN stand for? JOY
MPN is the title of this forum, and is for "Myeloproliferative neoplasm" (quite a mouthful) It was part of MPD "Myeloproliferative Disorders" until we got our own MPN category. Neoplasm is what makes it a cancer and attracts all the research funding.
It's why we're all here. This site is a good briefing:
I have read it's a good idea to have the injection just before going to bed and take paracetamol about half an hour beforehand. You may need to take paracetamol at regular intervals for the day after until your body adjusts.
Thank you. I think I will try this. Hopefully the 1st is the worst. X
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