Last reply 1 year ago
avonex

Hello

Just wondering who’s on ‘Avonex’ treatment? I haven’t start yet but my neuro doctor and I agreed that I’ll start with the base line before I can change to other advanced treatment. (I’m still learning about all this ‘MS’ stuff)

But hey, I have received a good news. On Wednesday I’ve been told I can have a MRI but it is be with a very strict protocol. I’m pleased about this.

I’ve noticed I’m more exhausted and tired! I can sleep for 10 hours but I’m still tired – are anyone experiencing the same??

Thanks
Moon

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I almost chose to take avonex but instead I chose to go with rebif, I just started last weekend but so far so good 🙂 stings with medicine is going in but that’s it 🙂 and yes I’m always very tired.. it takes a tole on your body.. rest as much as you need to 🙂


stumbler
1 year ago

Hi @missmoona , there’s so much knowledge about MS that needs to be collected when you start this journey. There’s a good source of information from the MS Trust here:-

https://support.mstrust.org.uk/shop

Try the Newly diagnosed section for an introduction.

Avonex is considered to be one of the first line treatments. Then, if your MS gets worse, a stronger medication can be considered. This conservative approach is being replaced with a more proactive “hit it hard, hit it fast” philosophy, to try and prevent accumulating further damage. And, it seems that your Neuro is unfortunately still in the former camp.

Can I also question the “MRI with a very strict protocol”? I would assume that you’ve already had an MRI prior to diagnosis, so this latest scan would be to monitor progression. The only questions on MRIs is whether it should be brain and spine. And whether a contrast medium is used to identify ongoing MS activity.

We have a lot of knowledge here on the forum, so feel free to pose any questions you have.


doubleo7hud
1 year ago

I’m just starting feeling cream crackerd every time I start to nod off on a night my legs decide it’s time to party. I do now have a excuse to kick the missis tho when she’s being a grumpy bugger so I can’t grumble really every cloud has a silver lining n all that bu ha ha harrrrr. Ms society are awsome with the info I ordered a box full of leaflets and stuff to read through I did think they would just tell me to get stretched but it all came through and was next day.


highheeledfagin
1 year ago

Hi. I was on Avonex for about seven years, I think. I originally chose it because I like the freedom of not having to take my meds every day as I’m prone to forgetting and stopping out for an unplanned weekend – hence my planned move to Lemtrada.

The side-effects were pretty harsh for a few weeks but, eventually, my body got used to it and I started to figure out a rhythm of when to take painkillers, what time to take my injection, etc. This eased a lot but I stuck to the pattern of keeping the following morning free just in case.

Despite mobility issues and Optic Neuritis, I still always consider fatigue to be my biggest problem. Modafinil does seem to help me a lot, but I get that evidence no longer backs this up.


rosarugosa
1 year ago

Hi, I started Avonex November 2011. I injected on a Friday evening and I’d say I had bad side effects for the first 5 – 6 weekends feeling very fluy and rough. I chose the Friday so that I had time to recover for work on the Monday. I just took Anadin. I still take Anadin the evening of the injection before bed…if I don’t I wake up with a headache. I now only get the occasional site reaction where the area goes red and itchy (about the size of a penny)

Had a review with my neuro last week and he has now suggested I change meds to either Tecfidera or Gilenya which I am looking into and considering. He’s put me in for another MRI as it is now over 6 years since my last one when I was first diagnosed.


candy88
1 year ago

Hi there,

I have been on Avonex in the past. Personally I don’t know how many years I could have stuck it out, the side effects were a bit rough for me. I wound up changing meds after a year because it didn’t stop my relapses.

I used to take it in the evening so that you sleep off some of the side effects, however the next day I was still exhausted, had a slamming headache and feeling wiped. I’ve heard of other people taking it during the week and going to work the next day so I guess some people aren’t affected as much.


martint79
1 year ago

Hi Moon,

I’ve been on Avonex since 2006 and I wish I could say that the side effects got easier with time, but I’m afraid I still get the “cold like flu symptoms” after all these years. It’s like a nursing a hangover only without the party the night before.

The upshot is though that the treatment does work; It’s been going on 6 years since the last time I had a relapse and there are plenty of days where I hardly feel any MS symptoms at all.

If you do decide to go on it just allow yourself that one day of the week where you are not going to be up for doing much and just need to ride out the day with plenty of rest and some pain killers.

Good luck,

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