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Long term affects of avonex

Hi I’ve now been in Avonex for 13 months. No relapse but I just feel slightly worse that I did a yr ago. My eyesight is slightly worse and I’m now getting periodical pain in my joints such as hips and fingers. I feel worse off than I did a yr ago but it’s not major. I’m now scared to come off the avonex just in case it has actually stopped me having a relapse. TBH I’m fed up but now don’t know whether to put up with the effects or not Has anypne else on avonex felt the same The last thing I want to do is moan about it. I’m working full time and play golf but something just ain’t right. Lesley

Hi Petal

Pat’s experience sounds terrible but there is no way of knowing if the Avonex was behind her/his behaviour. Talk to your medical team they will be able to weigh up all the evidence and make recommendations.

Good Luck!

It is good that you have stayed relapse-free on avonex. Maybe you would have without it: maybe you wouldn’t. That’s the thing about DMDs - you are in it for the long haul, and you will never know for sure how many bullets the drug has helped you to dodge. That can be a tricky thing to get one’s head around. It is always a temptation also to take out on the drug one’s general pissed-off ness about having ms and feeling that one’s life has slipped out of control. I have certainly felt that from time to time. I was relapse free, pretty much, on avonex for about 8 years, BTW. You need to talk to your doctors about joint pains etc, but please do not assume they are related to the avonex. Please do not throw the baby out with the bath water. Please do not decide lightly to come off. MS is a brutal illness - do not underestimate the risk it poses. Good luck with it all. Alison x

Hi Lesley.

Avonex reduces relapse rates and helps to slow progression, but it unfortunately does not stop either - nothing does :frowning:

If you haven’t relapsed and are only slightly worse than you were a year ago, I would say that it’s doing it job pretty well, but if you are still getting side effects that you are not coping with (is that what you meant?), then perhaps you should talk to your MS nurse about maybe changing to a different DMD?

I don’t recommend having a long break between DMDs though - my personal experience is from coming off Copaxone. In the 15 months it took to get onto Rebif instead, I had back to back relapses and went from an EDSS score of about 1/1.5 to 6 - in other words, from a martial artist competing internationally to someone who has to walk with a stick :frowning: Thankfully, Rebif has got me relapse-free again :slight_smile:

We are all very different though, and one person’s experience is never a good representation of the norm, no matter how startling that story.

Karen x

Pat, your story is very sad. Are you sure it was the Avonex?

Are you taking anything else to slow down your MS?

It’s a very scary disease and my heart goes out to you.

I am abolutely astonished that you would make such a recommendation! The fact is that one person’s experience is no guide to what will happen to another person: we are all completely different and can respond to meds in completely different ways. Amitriptyline made the skin in my mouth and throat literally fall off leaving terrible ulcers and pain, but it is an absolute godsend for others. Tizanidine caused me permanent nausea and dizziness, but it works wonders for others. Modafinil has transformed my life for the better, but it doesn’t work at all for some people. Etc.

Avonex has been proven to reduce relapse rates, reduce the severity of relapses, slow progression and delay the onset of disability. Why on earth would you recommend to anyone that they don’t try it / come off it simply because you believe that it gave you some extraordinary side effects?

Honestly shocked!

[quote=Pat]I had a terrible experience on Avonex and would advise coming off it immediately.

Pat, that is your experience but you should never give advice like that on a message board. The decision to stay on a DMD or stop it is a major one and is taken between a patient and their neurologist - they alone are qualified to give that advice.

Val

[quote=“Val”]

[quote=Pat]I had a terrible experience on Avonex and would advise coming off it immediately.

Pat, that is your experience but you should never give advice like that on a message board. The decision to stay on a DMD or stop it is a major one and is taken between a patient and their neurologist - they alone are qualified to give that advice.

Val

[/quote] Hi Val and Karen, I am with you on this Pat should not be giving advice like this, I am on Avonex and am having a lot of ms probs but will stick with it until I see my neuro in a couple of weeks. Karen x

No, it is not poison. If it was poison, everyone who took it would get ill. They don’t.

You have a strong belief. It does not make it the truth.

Do you think everyone who takes Avonex should stop? Even the people who are doing really well on it?

What about other forms of beta interferon? It’s effectively the same drug after all. Should I stop taking the Rebif that has actually made me better than I was when I started it?

What about other DMDs? Should those who have had their relapses stopped completely give up on Tysabri?

Avonex may not have suited you, but that does not mean it can’t be effective DMD for others: we are all different. In fact, your experience may be completely different to 99.999% of others or even more.

A question for you: how would you feel if someone reading your words stopped their Avonex?

Now how would you feel if they then had a horrible relapse? Because it would be your fault.

@ Petal. I am really sorry that your thread is getting emotional. Please don’t take it personally! And I hope you will take Alison’s excellent advice and get your joint pains investigated - there could be something completely unrelated to MS going on.

Sorry, but just realised something: 10 months? If it was the Avonex causing your problems Pat, why on earth would it take 10 months to “recover from it”??

Hi

My husband took Avonex for a number of years, he eventually came off it when he was dx as SP. However like you he was thinking about coming off, to be honest he did not think it helped and he did feel unwell all of the time. However of course you never know what you would be like without it. It is a real dilemma, only you can make that decision. I would not say that his progression has increased since coming off the Avonex and he never really had relapes as such before.

This post is irresponsible and potentially dangerous.

Only a medical professional should make the recommendation to come off a DMD like Avonex.

I have been given the option of the different DMD’s and have had the dvd’s sent telling me about them. I was only properly diagnosed a couple of months ago but am gonna wait to start injections as am trying for a baby.

However, when I have had my first child, I was planning on choosing Avonex as its only a once a week injection but now I’m not sure. There seems a lot of issues with it and it has put me off bit. More advice on this would be appreciated xx

Oh dear - didn’t know this would stir up such emotion. For a start I wouldn’t just come off the avonex. I’m a nurse and know the importance of informed discussion etc. It is a dilemma and I see my neurologist in November. I hardly get any effects when I inject but the bone pain has gradually got worse over the year . Now it could just be the early signs of arthritis in which case the avonex is doing its job and keeping me relapse free I’m sorry that Pat had such an awful time on it . But like any drug you sometimes get the extreme side effects . But telling someone to stop is wrong . I posted this topic as I just wanted to know if other avonex users and side effects a yr on and whether they changed meds or put up with it Lesley

[quote=“Whitey”]

I have been given the option of the different DMD’s and have had the dvd’s sent telling me about them. I was only properly diagnosed a couple of months ago but am gonna wait to start injections as am trying for a baby.

However, when I have had my first child, I was planning on choosing Avonex as its only a once a week injection but now I’m not sure. There seems a lot of issues with it and it has put me off bit. More advice on this would be appreciated xx

[/quote] Please do not be put off by one person who had a bad experience with avonex and who seems to think that, because it happened to her, it happens to everyone. It doesn’t. BTW I really liked the once a week aspect too, and found that avonex fitted into a busy life with minimum fuss. Alison x

As always, Alison has done a much more succinct reply than me, but I’ll post this nonetheless :slight_smile:

If there is one thing to keep hold of during the decision making process for DMDs it is that individual personal experience means nothing. We are all different!

Clinical trials (and ongoing data thereafter) provide the best source of information because they study large numbers of people and average out all the extremes. This tells us what the most likely outcome is for anyone starting fresh. For example, some people taking a particular injectable DMD may stop having relapses altogether whereas others may find it’s of no benefit - everyone else is somewhere in between. Overall, these add up to a reduction in relapses of 30% on average. So someone starting on an DMD can reasonably expect a reduction of 30%, hope for more, but not be devastated if it’s less (and in which case you switch to something else anyway).

Different people have their favourites between the four injectables, but the truth is that there is little to choose between them. Yes, Rebif44 has the best data overall, but Avonex has the best performance for slowing progression and Copaxone has the benefit of no “flu” (which for some people is a big deal). Each one of them has pros and cons. Each one of them has potential side effects (all drugs do!). These side effects have been studied extensively - and we are talking about drugs that have been widely used for more than 20 years. To claim that further, severe, side effects are known, but patients not told about them is incredulous - as well as libellous! (And pharmaceutical companies have very active lawyers!) Seriously - it is nothing but scaremongering.

If you stick to the facts, DMDs reduce relapse rates, reduce the severity of remaining relapses, slow progression, reduce disability and even increase life expectancy. Yes, they can have side effects and, unfortunately, for a small number of people, these outweigh the benefits in which case they can switch to an alternative DMD.

Please don’t let one person’s scaremongering undermine the facts - if we did, there wouldn’t be a single drug left for anything, not just MS!

Avonex won’t stop you having ms symptoms, it’s supposed to give you reduced frequency of those symptoms, given you haven’t had a relapse for 13months, I’d say it sounds like it’s doing it’s job. The reason you feel like crap just sounds like normal ms to me.

I’ve been on Avonex now for about 9 months, I still get the shivers some nights I take it and feel weak as a kitten the following day. I also still have occasional ms symptoms. However, that’s still light years better then how I felt unable to stand, see, speak or use my fingers when I have a relapse.

You say you are still working and playing golf, based on that, I’d say you would be crazy to risk ending up in a wheelchair sooner rather than later by comming off DMDs. If I could have started DMDs 3 years ago while I was still capable of walking and driving, who knows how much longer that would have extended my freedom.

Pat, what you are saying is dangerous and irresponsible nonsense. Only a neurologist can advise somone whether or not coming off a DMD is in their best interest and clearly Avonexis NOT poison. All the clinical trials and longitudinal studies have proven its safety record.

Has it occurred to you that you may have sufferred a nasty relapse while you were on ther Avonex? It can happen you know?

Whitey, don’t be put off using what is proven to be a very effective and convenient DMD just because one person posts an ill informed and hysterical post on the Boards. Pat’s response is not worth factoring in to your decision. Good luck with the baby :slight_smile:

Belinda

I can’t advise you on Avonex as I have no experience of it.

Please do not be influenced by Pat’s post, it was at best irresponsible.

Unfortunately anybody can write anything on the Internet and this was an example of the worst kind of post.

Please talk this through with your medical team before you make any decisions.

I am not eligible for any DMDs but I can imagine how difficult any decisions are. Believe me, if your doctors are recommending DMDs then it is in your interest to take them.

I have recently come off of ‘Butrans pain patches’ as I’ve suffered migraines and sickness. The headaches I can cope with but the sickness I can’t. I wouldn’t say that the Butrans patches caused my problems but because of all the other drugs I was becoming permanently constipated and this was causing the sickness. Sometimes drugs do not suit one person and do suit someone else. I’ve been on Betaferon for 3 years now and although MS is progressing and have not completely been relapse free; I certainly would be much worse without it.

Everyone’s experiences are different.