Hi I was dx in Sep 24. Went on Avonex in October and while I didn’t like injecting or the not sleeping and flu side effects after it, it seemed ok. However for the last 4 weeks I have got really miserable and stressed about taking it, in the days leading up to meds day, that I really can’t face injecting today.
Has anyone else experienced this?
Oh yes, I came up with all sorts of reasons to put it off. While it would be irresponsible of me to suggest Dutch courage, I must confess that that did the trick for me many a time.
I think it can feel as if the demand that one stick a needle in oneself can just feel like an outrageous thing on top of having MS in the first place. And it is! I needed to reach a place when I thought yes it is outrageous but I’m going to do it anyway. And that certainly wasn’t always easy. The idea of sticking it to MS helped too…
Thanks for this. I’ve had the conversation with my MS Nurse and been offered Aubagio instead.
Not sure what to say. Been using Avonex for years and years . Still hesitate when pressing the auto injector and just accept the side effects . Inject in the evening , take paracetamol and just write off the next day or two with cups of tea, paracetamol and lazing around , watching TV ( it’s not always that bad but I don’t do much on those days).
Not that this is in anyway helpful to you but before the auto injection pen we were given syringes to load into something that looked like a mini spring loaded gun or torture device of some sort . I’m sure the needles were a bit longer too. Absolutely hated that but fortunately my now wife was a nurse and used to inject my bum .
I have been on Avonex for 25 years and still hate injection night. The only way I can do it is by drinking a big glass of red wine or two. Another tip is to think how much it costs as it is expensive. It sort of makes it easier than just being cheap. Promise yourself a treat after you have done it. I ate a lot of chocolate when I first started.
How long have you been on Avonex for? I have been on it for 25 yrs and my M.S. nurse wants to take me off it as I haven’t really had any relapses in all that time.
Is your MS nurse saying that you are showing unmistakable signs of the gradual worsening that is characteristic of secondary progression? Do you agree? How sure is he/she that the appearance of relapses that can co-exist with secondary progression isn’t going to happen to you? Or are you still RRMS but your MS nurse thinks your MS has magically fixed itself? I ask these questions as someone with aggressive RRMS who has been on DMDs for many years, has not had a relapse for quite a few years, shows no signs of secondary progression yet and will bite the first person who tries to take away the medicine that is clearly working and keeps me well.
That sounds like a very good idea. Good luck with it.
My nurse has told me that as I have been on Avonex for 25 years and am now 65 yrs old, I should come off it. Still classed as RRMS with no relapses so she thinks I can do without it. I have joined the forum for advice. Thank you and I will put up a fight when I see the consultant on Friday.
Hi Nk. A little over 18 years I think ( I really should look up such things ). I was diagnosed with RRMS and at my last meeting with her my MS Nurse did say that you seem to be doing very well, one possible relapse in the first few years but nothin since. We then had a slightly unreal discussion about how I will likely experience gradual deterioration or rather a worsening of symptoms but nothing terrible/ no sudden worsening in the next few years. At no point was secondary progressive mentioned but I did express my worried about being taken off Avonex. Her reassuring reply was that even after years and years of no relapses you can still get some so it’s best to stay with the Avonex.
I also looked up relapses and secondary progressive and yes, they do still occur.
I tend to follow and agree with Professor Gavin Giovanoni I.e that basically MS is MS and there is no real difference between PPMS, RRMS and SPMS which are basically categories invented for drug approval and licensing purposes ( if I’ve understood it correctly).
I think I’ve also said to her that the fact I am doing well with no relapses shows that the Avonex is working so why stop ! I didn’t say this but in my mind it’s a bit like telling someone that their life saving treatment seems to be doing its job so we are going to stop it.
As a sort of joke my wife used to buy me a dark chocolate Bounty bar!
I’m over 60 too. There seems to be some vague suggestion that the actions of a disordered immune system like ours become less troublesome as our immune system gets old and tired, but I’m not setting too much store by that, quite honestly. It’s my nervous system health that’s at stake here, not theirs. I have spent 25 years trying not to let MS see a chink in my armour and I’m not declaring a unilateral ceasefire just because I’m old. I’ll need to see MS lay down its weapons first, thank you. 
I’m probably an unusual animal here. I had my first bout of Optic Neuritis in 1996 and my second in 2023. Nothing noticeable in between. That triggered the process of diagnosis and I got the decision in Sep 2024. I was happy to go on Avonex as it was supposed to have the least side effects. I’m a T2 diabetc and I’ve read that tecfidera can spike blood sugars which I don’t want. Hence Aubagio.
Thank you for your reply. My nurse says my M.S. is probably benign and seems very keen to take me off Avonex. I will ask the consultant how do they know that it
isn’t my Avonex that is holding it back? The only way of finding out is to take me off it and I don’t think I want to take the risk. What percentage of people who have come off are still relapse free? I might be being stupid but I am wondering if it might be a cost cutting exercise as it is expensive. £10,000 a year I think and I have had 25 yrs of it. My nurse phoned me up to ask how many injections I have left and isn’t signing my next prescription until she hears from the consultant. I’ve made a list of questions and will be seeing him tomorrow. Wish me luck!
Indeed. All the luck in the world.
PS I’m 62 and have had it very easy in comparison to some of the warriors in here.
My nurse said I have had so many years of Avonex that it probably isn’t making any difference as it wouldn’t be so effective. I have nocturnal epilepsy and had 3 fits before I was put on medication and none since. That was over 30 yrs ago and they have never suggested taking me off my pills. I’ve made a list of questions for my consultant so it will be an interesting appointment. They have been a bit
slack with me as I have only had MRI scans for the last 7 years as I was never sent for one after the first 25 yrs ago. My scan and lumbar puncture results have been lost too. I didn’t even see the nurse or have that many blood tests either. I’m not one to make a fuss and as it was working I didn’t bother them.
I’d make a fuss. I’m new ish at this and I imagine money is tight but its about getting the best care for you that you can. If there are money issues that’s the neuro teams problem not yours.
Think I would be asking for something in writing including a firm statement that there is absolutely no risk to me and no chance of future relapses ( and depending on how helpful or unhelpful and unsympathetic the nurse and consultant became I would be muttering something about sending a copy to my lawyers and the health board!).
It might be worth checking the NICE guidelines. NICE ( national institute for clinical excellence) set out national guidelines on pretty much all aspects of health/ medical care and I have a vague memory that in MS the guidelines say something about decisions being taken jointly with the patient or something like that. I might well have got that totall wrong so definitely best to check
So her argument is that Avonex is so rubbish that it couldn’t possibly have been keeping you well all these years? Bet they didn’t make that argument when you started! 
There are some rather flimsy arguments there, I think!
I’ve seen the consultant today and I do think it is a cost cutting exercise as she did say “it isn’t just the cost” that is considered. She said DMT is not for life and it something I have to accept. I have been given a year to let it sink in. My nurse thought my M.S. was benign but the consultant says it is secondary now as I have less energy, poorer memory and I can’t walk as far. Recent MRI was good but that doesn’t count. I asked what percentage of people who came off Avonex ended up worse off and it is 10% in the “study”.