Last reply 5 years ago
First Avonex injection almost killed me!!!!!

So I took my first Avonex injection yesterday. I was on Rebif before and it used to hurt like hell. The fact that I was meant to take it thrice a week didn’t help either! I took the Avonex yesterday and even though I was sorta freaked out after reading the literature, it didn’t hurt at all!! I was expecting the flu like symptoms but what happened really took it out of me! Started shivering so slept for a bit…then I woke up and had to go to the loo…and I find that I couldn’t get off the bed! Couln’t stand…legs had no strength in them! Couldn’t take my weight…and I’m a scrawny guy!! I had to crawl to the loo and crawl back! I couldn’t get back on the bed so ended up sleeping on the floor…couldn’t see anything either, everything was so blurred. Finally managed to find some Ibuprofen, had 400mg and went to sleep again…woke up today and I’m fine, but is this gonna happen every week?? Cuz I’m gonna start sleeping in the bathroom then!! Someone advise please because I’m already very depressed and I don’t wanna add to it now!!

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


inesmartins
6 years ago

I take Avonex, and I never experienced something like that. But since the first day my nurse told me to always take a paracetamol or ibuprofen 5 min after the injection. After 6 hours I always start to feel really bad, and I take one more paracetamol. I dont know if what you had was related to avonex or maybe the stress? But I think next week you sould take the ibuprofen after the injection. And keep calm!


ramiro
6 years ago

Hey I take Avonex pen injection and I also get the same symptoms that you get, on my first injection I had the same reaction and that was even though I took 500mg nurofen 1 hour before and I still do the same routine every sunday the second time I put the zimmer frame which I dont use anymore I am now on my 9th injection and the symptoms still carry on but very mild and it looks like they are fading now I just get weak muscles the next day and a small fever during the night so don’t worry it will calm down and I spoke to my nurse and she said they will eventually disappear so don’t worry. I think you should either take the nurofen an hour before or straight after the injection and just relax while you do the injection


bloomers1968
6 years ago

Hey over a year into Avonex and it does get better, but its never great. No relapse since i started so its worth it


sian810
6 years ago

Hiya i switched from Rebif to Avonex as i was getting skin site actions with Rebif. Ive never had those symptoms with either i have flu symptoms sometimes like the shivers. I also take Paracetamol plus Ibruprofen about half an hr before i take EVERY injection and then when you go sleep that should hold they symptoms off whilst you sleep. It does wake me up shivering sometimes but not very often. Your symptoms sound a lot more and i would check his with you MS Nurse to confirm
good luck x


namansareen88
6 years ago

Thanks guys…I feel a little better knowing that things will get better with time…well as long as I take the necessary amount of painkillers! Been feeling down for a very long time now and I just didn’t want this to become another reason…I wrote a blog soon after I got diagnosed…here’s the link if anyone wants to have a read:

http://namansareen.blogspot.co.uk/2011/02/thats-life.html


danrb80
6 years ago

Wow scarey stuff i just my MS diagnosis today confirmed and looking at going onto avonex or rebif is this what u cab look forward to?


namansareen88
6 years ago

Got it confirmed today? Sorry man…I’d recommend Avonex compared to Rebif solely on the basis that you have to take it once a week…as opposed to thrice a week with Rebif. So you only have to feel shitty(er) once a week…Rebif comes with a cool little device with an LCD though…just doesn’t play MP3’s or let you surf the web! But yea, from what I understand, this is what you have to look forward to…


namansareen88
6 years ago

Also Avonex is a lower dose than Rebif…30, compared to 44 with Rebif.


becks
6 years ago

My first avonex was awful but after that was soooo much better but i always took ibuprofen 30 mins before injecting at teat time and another ibuprofen before bed and that was usually all i needed – if i didn’t take the second ibuprofen i found i woke up in the night with achy bones in my back and shivery so i tried to make sure i took it and had no problems – i do remember that 1st injection though and the side effects were awful but things defo were better for me thereon in x


inesmartins
6 years ago

Something that I would like to know is if you taked the all injection the first time? Because in my case I did it gradually. First time the nurse only gave me 1/4 of the injection, next week 1/2… so I would get used to it, I think…


ophelia
6 years ago

I’m considering Avonex as it seems to be the one that will fit into my lifestyle best….I’m freaking out slightly reading the side effects….how have most of you felt?


namansareen88
6 years ago

I freaked out after reading the literature…only taken one so far…next update after I take the second one on Monday!!


danrb80
6 years ago

Im just gonna wait to see what MS nurse says i think otherwise ill freak myself our haha 🙂


becks
6 years ago

i’ve worked my way thru rebif (allergic and lasted 2 weeks), copaxone (2 years but then developed IPIRs) so changed to avonex (7 years ish) and would defo say give it a go as everyone’s experience is different….but now avonex no longer works for me and i’ve just had 4th infusion of tysabri today….i sound like a DMD junkie!!!!! 😉


maryklou
6 years ago

My first injection of Avonex (3years ago)was the worst experience of my life, i had all the side effects you’ve mentioned. I woke up in the middle of the night shivering out of control, my bones & muscles were in agony and i couldn’t move my legs to get out of bed so i stayed there half the day lol!This happened pretty much every week iv injected (i had an extremely painful night last Saturday, which reduced me to tears). I have to admit, i have had some good weeks where i haven’t experienced any of the side effect but that’s not very often unfortunately. I’m hopefully gonna be switching to Copaxone if the doctors allow it. I hope i dont scare you with my experience of Avonex coz like everyone says, everyone’s ms is different so maybe your side effects will ease up. The doctors do say give it at least a year or so, so hopefully it gets better for you 🙂


aaron84
6 years ago

i take rebif i started on a 22mg dose then gradually up to 44mg however once on 44mg a couple of times i woke up sweating and uncontrollably shivering but main problem was i would get bad headaches so my ms nurse put me back on 22mg to see how i got on and six months on all is going well although i worry because im on a smaller dose its not having yhe same benefits as a larger dose would


namansareen88
6 years ago

I was on Rebif before and man, that hurt! That was pain like I had never felt…Hope it works out better for you @aaron84! I was happy with the Avonex pain…it didn’t hurt going in (sorry, that just sounds dirty) but the after effects were…like a nightmare that you can’t seem to wake up from! @maryklou…I feel your pain…well, I felt your pain! But gonna take all the precautions next time I take the injection and give you an update!


t
6 years ago

@aaron84 – I remember reading a study somewhere that showed there wasn’t a huge amount of difference in efficacy between the 44mcg and 22mcg dosages of Rebif….. I can’t remember the exact study but it might be worth doing a bit of googling!


maryklou
6 years ago

@namansareen88, the weeks were my side effects were not as bad, i usually injected quite early (around 4, coz my side effects will usually kick in 6 hours after i inject) and tried to keep as active as possible during the rest of the day, so that my muscles dont get lazy and stiff.


namansareen88
6 years ago

Second Avonex tonight! Tomorrow is gonna be so much, I can just feel it!


namansareen88
6 years ago

So I took my second Avonex yesterday and I’m alive today! Legs working fine…walked to the loo and back!


ophelia
6 years ago

Hurray!!!! Glad you’re feeling well!!!


maryklou
6 years ago

Glad to hear your second injection went better 🙂 hope it carries on like this.


namansareen88
6 years ago

@ophelia and @maryklou…cheers guys! I hope it carries on like this too!


highheeledfagin
6 years ago

I’ve been on Avonex for about 2-3 years now, and in the early days I also had the kind of symptoms that you described. It is definitely much easier now, though I still occasionally just have a bad one that puts me out of commission for the first half of the day. I take one paracetamol and one ibuprofen five to ten minutes before my injection and then ibuprofen as needed when I wake up. I found I got stomach ache if I took the ibuprofen before I’d eaten but didn’t have the strength to go find food. Now I always make sure that I have some sort of snack food near my bed on Avonex nights.


namansareen88
6 years ago

I took my third injection last night and I’m pleased to say that this morning when I woke up I had forgotten this little fact. It was like waking up on any other day…then I remembered and I was like “oh yeaaaaah….that DID happen last night!”


michael
6 years ago

Good to hear the symptoms are geeting better. I have been on avonex for 5.5 years and I barely get any side effects now…and no relapse yet
touch wood.


inesmartins
6 years ago

That’s great! Now you can have one more week without thinking about it! Yey!
I’m waiting for my Doctor to tell me if I can stay on Avonex, I really dont want neddles more than once a week.
Take care.


highheeledfagin
6 years ago

I found that I was missing injection nights because I kept forgetting, and this is quite easy when you only do it once a week. I can’t find the details now that it was so long ago, but if you have that problem there is a text message service that just sends you a message ten minutes before the time you’ve selected to remind you to take the avonex out of the fridge, and then another at the time you need to take it.


darrenl
6 years ago

Phew! So relieved to read some of the comments in this thread – especially Booyakasha! I took my first Avonex pen injection yesterday, supervised by my MS nurse, and was amazed at how painless and easy it was, and the complete lack of skin trauma. I was warned that I might get flu-like symptoms, but wasn’t expecting it to be anything like as bad as it was. Cold and shivering, but I was burning up on my face, weak legs such that I had to really support myself when walking, and spasticity. Today, I feel 100% fine. Good to hear that the side effects don’t exist or are greatly reduced for subsequent injections.


darrenl
5 years ago

I just thought I’d post an update. I’m about 6 injections done with Avonex so far. Nothing compared to the side effects of the first injection, but they are still present. I was starting to get a little anxious about taking the injection. I had a Google and people on other websites were talking about the importance of being well hydrated. I made sure I drank plenty on the days before, on and immediately after the injection. Took 2 paracetamol, injected 30 minutes later and went straight to bed. And … it worked brilliantly! I woke at 3am, bathroom break a little unsteady but not bad at all. The following morning, completely back to normal, I barely knew I’d taken the injection. Now, I’m feeling a lot more optimistic about my future with Avonex. Just thought I’d say …


Anonymous
5 years ago

You are so not alone with this one. I had exactly the same symptoms with my first Avonex injection, luckily i was in hospital at the time. My neuro had me on steroids before the injection and after i was put me back on the steroids.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.