Hi, I’m new to this forum and after a bit of advice / support.
I was diagnosed earlier this year and started Avonex last week. After the shot on Wednesday (about noon, in the clinic) I started feeling flu-y which I was ready but then later on while getting ready for bed at about 9pm suffered a horrible panic attack, which I was not ready for! I still felt anxious and upset all the next day and didn’t really start to feel myself again until Friday afternoon.
I am waiting for a call back from the clinic about this as I’m now really nervous about taking a second shot this week. I was wondering if anyone else has experienced something like this - it’s not a listed side effect but I can’t think what else might have triggered it (never had a panic attack or anxiety problems before).
I was told I couldn’t take avonex as I have a history of depression, panic and anxiety. I think that just because you don’t have a history of panic or anxiety it doesn’t mean you won’t suffer that side effect. It’s not a pleasant feeling. Definitely speak to your MS nurse or Neuro as it may be that avonex just isn’t for you. I was put on copaxone instead with no problems. Good luck x
why are you not taking tecfidera?
Thank you, that’s helpful. I will discuss with my MS nurse when she calls me back!
i don’t know what that is!
Going off to google now…
i was injecting Avonex for about 18 months. The flu side effect was pretty regular throughout. I’ve been on Tecfedira for ten months and it works for me, although their are side effects.
Remember with DMD’s their is a choice of them although I believe it’s worth taking the one with the most promising results
I kind of agree with Paulo. I don’t get why someone newly diagnosed would be given an injectable with a 35% reduction of relapse rate and pretty unpleasant side effects rather than daily tablets with 50+% reduction of relapse rate and (generally) short lived side effects.
It was different 10+ years ago when only beta interferon and copaxone were available. I even question why take Avonex over Plegridy - which is similar to Avonex in that it’s interferon 1a, but subcutaneous fortnightly rather than intra muscular weekly.
Personally, I’d go back to your neuro, explain what happened and try for a different, more effective DMD. Ie. Tecfidera or even Gilenya. There’s certainly no reason why you should take something that gives you panic attacks.
(By the way, I had cognitive problems with Avonex about 13 years ago, had Copaxone for 5 years, liver problems with Tysabri and am now on Tecfidera)
Thanks to everyone who posted earlier this week - much appreciated.
By way of an update, after umming & ahhing and speaking to my MS nurse, I decided in the end to try a second shot of Avonex last night rather than jack it in after only one try. All went smoothly (phew!) and, with the help of plenty of painkillers to control the flu symptoms, I seem to have avoided any problems this time around. Will keep my eye on it but it does look as though last week’s anxiety/panic attack may have been a one-off.
For the record, the reason my neurologist recommended Avonex as the first DMD to try is partly because of its 25-year record meaning safety data is well-understood, and partly because the 30% or so reduction in relapse rates is less of an across-the-board reduction, and more like 30% of people doing very well. So in his view it’s worth finding out if you’re in the 30%.
(Tecfidera wasn’t specifically discussed but from what I’ve found out it has only been licensed for about 18 months and there are only a couple of published clinical trials - so I guess that would explain why my neurologist didn’t suggest that as the first option.)
Anyway, thanks again x
Angela… good luck with the Avonex. If that is the way you want to go, then good for you.
But food for thought… Tecfidera has been around for a long time, and was used for the treatment of Psoriasis before MS and thus has proven long term, large population, safety indications.
It may have been available for only a short period of time for MS people in the UK, but in other countries, it has been around for longer. And in any event, the ‘couple of clinical trials’ will need to have been peer reviewed and of adequate ‘guinea pig’ numbers and duration to result in public availability.
For example, two years ago, a trial examined safety after four years of use of continual use. BG-12: Sustained Efficacy, Safety Out to 4 Years in MS
Six years and counting is somewhat more than 18 months!
Yes, Avonex has been around for longer. But then so has coal powered trains and dial up internet. thankfully, the realisation of progress isn’t usually inhibited by the myopic attitude that chronology trumps all; otherwise, what hope for progress is there?
Frankly i think your neurologist deserves a slap in the head. It is a no brainer that it is better to see if you are that one person in two, than in three.
Sincerely, the very best of luck.
I agree with Paolo
Your neurologist is living in the past. What is he thinking? putting you on Avonex when there are newer/more effective drugs available.
I also feel he deserves a slap!
Tecfidera has a very good and long safety record - as Paolo explained - its been used for years for psoriasis.
Did you explore all your options before starting treatment?
Is your neurologist thinking of his budget? i wonder…
Good luck with the Avonex but i feel things have moved forward now.
As I said I don’t know a lot about tecfidera, although the comments on here have certainly inspired me to find out more. And to do some more research generally - which perhaps I should have done already but there you go!
So tecfidera does look promising: but the evidence is still fairly limited. Having read both the NICE evaluation of Tecfidera, the Cochrane review of the Tecfidera studies, and several other papers, I am not convinced that it’s obviously better than the other available first line DMDs. Not to the point where I’m ready to give my neurologist a slap anyway!
There are no studies that directly compare beta interferons with Tecfidera.
There is one study that compares directly with GA, and shows that Tecfidera may be better than GA at reducing relapse rates, but with no significant difference on disability progression. GA is thought to be broadly similar in effectiveness with interferons, implying that Tecfidera may have some improvement on ovearll relapse rates compared with interferons. However the NICE report made clear that the relative treatment effects are uncertain at this stage due to difficulties in making a fair comparison among the various treatment options - e.g. the studies did not all test the same things.
As against that, there is some evidence that for certain groups of people interferons are more effective than the overall 30% number would suggest. For example they seem to be more effective specifically for those who (like me) are being treated early in the course of their MS. There is also, anecdotally at least, a suggestion that the c. 30% figure for interferons is not an across-the-board effect due to the fact that there are groups of people that don’t seem to get any benefit from it i.e. it either works brilliantly or it doesn’t really work much at all. There is also better safety data (not saying the Tecfidera safety data is poor, only that interferon has more trials over a longer period and apparently fewer serious side effects).
Based on the above, I’m not unhappy with the recommendation I received and the decision made to start with Avonex. The first week was pretty rough although I now suspect that it was a generalised anxiety rather than a specific side effect of the injection. The last 2 weeks have been fine with just some modest aches and pains easily managed with paracetemol.
I realise not everyone gets on with this drug - which it is why it’s great that there are options - but having now done the research that I perhaps should have done before, on the whole I’m not sorry to be giving it a try.
Also, I’ve spent most of an evening reading MS things now, so I’m off to guzzle some chocolate before bed
“…the comments on here have certainly inspired me to find out more…” - music to my ears!
“…but having now done the research that I perhaps should have done before, on the whole I’m not sorry to be giving it a try…” - excellent news.
the very best of luck to you!