5 years ago
Avonex-Help and advice

Hey guys,
I got the call today to say I have an appointment this Friday to start with my treatment. I am going to be using Avonex, this is my first experience with treatment for my MS. Was wondering how those of you using it found it in the beginning? How were the flu like symptoms, did they persist? Does your medication effect your decision/how often/easy it is to travel? Are there any pointers to know about? Anyone experience the more serious side effects?
I know my doctor can tell me all of this stuff but sometimes it helps hearing from others in the same situation. Also I live in Italy now and am not fluent in Italian so the language barrier can make me nervous sometimes!
Thanks for and help/advice you can give.
Nikki x

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Hi Nikki,
I’ve been taking Avonex for about 4 years and I don’t really have any side effects. I take a head ache tablet just before the injection so that probably helps. I have traveled a lot with the medication and have never had any problems. Personaly I think the Avonex works great having been on a 3 times a week injection before.
Hope that helps!

Hi Nikki
I have now been on Avonex for 12 months and was on nothing before so no comparisons here to help like that.
I have got on fine really, I take pain killers 1hr before and inject in the evening so I then am not long before bed and sleep off any side effects.
Occasionally I have a ‘heavy head’ in the morning but nothing too bad and twice I have been super super hot and uncomfortable during the night so think that must be my flu like side effects.
I have never had problems traveling with it as 1st delivery brought me a travel case and cool blocks to pack it in and to keep it cool so no problems but never been abroad with it though.
Hope that helps.
Zoe

I took my Betaferon kit with me to the Maldives. Only had a little problem at Gatwick – they confiscated my cool blocks – well, they weren’t cool as I didn’t need to use them! 🙂

Hi Nikkileigh, I’ve been taking Avonex for nearly a year. I take it on a Friday at 6pm and make sure I’m dosed up with Paracetamol (Acetaminophen)and also well hydrated. The aches and shivers start around 9pm and I feel generally lousy for the next 6-8 hours. I tend to go to bed early and try to sleep through the worst of the side effects. I tend to feel a little fragile and wooly headed on Saturday mornings but I’m usually back to normal by lunchtime. I keep hoping that the side effects will get better each time I inject but so far I’m still waiting. The good news is I haven’t had a relapse since I started it so it’s all worth it in the end. 🙂

I’ve been on Avonex for three years, now. I take painkillers beforehand but I do tend to get some side effects, though definitely nowhere near as bad as when I first started it. I’m mostly fine by morning but once every two months or so I still get a bad one. I wouldn’t change because I love only having to do the injection once a week and not having to worry about taking any with me if I stay out for a day or two. I went on holiday to America last year and had no trouble with it.

Hey, I’ve been on Avonex since Jan 2011 and was on copaxone for two and a bit years before that. I was initially worried about the side effects as I’d purposely opted for copaxone to avoid them! The very first time I took avonex the nurse advised me not to take any painkillers so that I’d know what my baseline side effects were like. Within a few hours I had a hideous headache! To be fair though that was as bad as it’s ever been and the headaches have improved over time. I recently switched from evening injections, like most of the guys on here, to morning ones as I was finding I was really groggy and headachey the morning after. I’m finding it much better this way, sometimes get a bit headachey in the afternoon but seems to work better for me this way so don’t be scared to experiment a bit and see what works for you! Aside from the headaches I’m finding avonex suits me much more than the daily injections of copaxone- once a week is far more civilised! I’ve not travelled with avonex yet but the fact that I take it on a thursday means that weekends away no longer involve cool bags, sharps boxes and searching for fridges! Plus you don’t get any of the itchy red injection site reactions that you do with sub-cutaneous injections- another win!

Hope it all goes well, keep us posted and ask as many questions as you like- its what we’re here for! Good luck! xx

I’ve been on Avonex for a grand total of 3 weeks!! The first time I took it was in an afternoon with the nurse specialist advising me, I fell asleep for about 3 hours on the sofa and had a very mild headache, the day after just felt as if I’d done a moderate gym session but managed well with ibuprofen. The following 2 weeks i took it just before bedtime, I’ve felt a mildest of aches the following day but all in all it’s been a good experience so far (compared to what I expected!!) good luck!!

Thanks so much for all your replies guys. Really appreciate it. I have taken my first injection at 10am with the MS nurse this morning, so far all good. A little bit shaky and a mild headache but I think that might be from the nervousness! My doc gave me a wee card to take on the plane with me when I travel so fingers crossed there will be no problems there (I travel by plane quite frequently). Will keep you all updated. 🙂 <3

Well done Nikki Leigh! The hardest bit is over! I’m convinced that the headache after my first jab was down to tension rather than the drug- I was a complete wreck! Crazy that I’d been injecting every day with the copaxone autoject but one manual injection with the avonex and I was a mess! Hope you have a nice afternoon after the stress! xx

Great news Nikki Leigh, well done! Hope now that 1st is done your afternoon goes well and future injections xx

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