I’ve been on avonex for six weeks. I hate it, hate needles and hate the weekly reminder I’ve got MS. However I hate the alternative more so have to persevere and hope it gets easier.
I’ve been on rebif for 9 years.
My ms is mild and has remained mild. My ms was diagnosed early and i went on the dmd quickly.
There is evidence to suggest that taking dmd’s early can reduce relapses in frequency and severity therefore slowing down the damage done to nerve fibres.
Your ms is mild now - you are one of the lucky ones. Keep your ms mild by taking control of it and get yourself on a dmd.
It may be mild now but ms has a way of catching up with you. I’ve been on this board and spoken to people who have regretted their decision not to take the dmd’s as their ms is no longer mild. They are suffering the consequences of their decision.
No-one knows the course their ms is going to take. Would my ms have stayed mild without the dmd’s? I will never know but why take the risk - once the damage is done there is no turning back.
Your neuro or ms nurse will talk about the dmd options available to you.
Best wishes
Teresa.x
I did speak to both my nurse and neuro.
The doctor suggested google, do some research. And I think the nurse wants me make my own decision, as its my body. But I kinda want someone to tel me what to do. Plus also I’m still trying to come to terms with the fact I have MS and she pointed out because I’m still struggling with it all then I might not take my meds properly.
It is so much easier when you see a doctor tell them whats wrong and they then give you some pills to take, simple. I’ve never been good at making decisions
Hi MM.
I completely empathise with the predicament that you’re faced with.
I was offically diagnosed with RRMS in June 2013 after suffering what appeared to have been a stroke affecting the whole left side of my body. However, never for one minute did Multiple Sclerosis pop onto my radar. To be honest, I knew it was serious and I knew it was neurological, because I could not perform several straightforward neurological tests. However, the news hit me like a freight train!
My MRI scan at diagnosis looked horrendous. The lesions had appeared like newly formed continents- truly horrible!
Because my MS was clearly very aggressive, my Prof recommended Alemtuzumab aka. Lemtrada- a ‘top end’ treatment.
“We’ve got to hit this hard”.
I did not have to think about it too long. The train was heading straight for me and I did not want to experience the impact.
The decision had been made for me, really!
When we discussed my medical history, it transpired that four previous relapses could be traced back to the first in 1995 when I was 27 years old.
In all those years, I had actually been very, very lucky. None of those four ‘relapses’ were major and my life continued pretty much as normal. After all, I was very fit and very active.
Currently, there is no correlation between my recent MRI scan and my current presentation. I’m still very fit and very active. But, I have now been left with a permanent reminder that I am not as fit and healthy as I had once thought.
I now live with Secondary Dystonia. A permanent reminder that I now have Multiple Sclerosis.
How different things may have been had DMDs been available to me!
As many of the contributors have said, this is about safeguarding the future.
Good luck with your choices. Listen carefully to the voices of experience.
Tracyann x
The injectable dmds are not as effective as Gilenya and Tysabri. Tysabri is the most effective drug in slowing down accumulation of disability. You have it as an infusion once every four weeks - so there is a needle involved but you’re not injecting yourself and it’s not happening very frequently.
I wish I had been offered an effective drug years ago before I had the disabilities I now have. That didn’t happen for me but you have the opportunity to have one of these very effective drugs right now. I urge you to think very seriously before you turn these down - once you have the disabilities that come with MS, it is very unlikely that you will ever rid of them.
Sorry to be so strident about this but you should think about these things now - in the future you may look back and think ‘why didn’t I take the best drug as early as possible?’.
Sewingchick - i just want to point out that the poster of this thread has milld ms at the moment.
Gilenya and Tysabri are second-line dmd drugs. She will not be offered these drugs at this point as will be only offered first-line drugs.
The second line drugs are usually only offered if the first line injectables and new oral drug have failed to stabilise your ms. The only other reason the second line drugs are offered at this stage is if her ms is highly active from the beginning and they need to ‘hit it hard’.
Gilenya and Tysabri are very effective but they are not available to me until my rebif fails to keep me stable.
best wishes
Teresa.x
She says right at the beginning that she has been offered tablets - I assumed this was Gilenya - sorry if Aubagio is more like the injectables, my misunderstanding (didn’t read the thread with enough care before wading in).
Yeah its the new drug aubagio that has been mentioned to me. However much I’d rather take a tablet, I’ve been doing some reading and it sounds like there are more side effects. But it is still so new.
The whole process is so daunting, think that’s why I’m probably avoiding it. But I know I have to and I don’t want to have any regrets.
Aubagio is such a new drug that i don’t know much about it myself but i did read on this site, it was the first oral drug to be licenced for first line patients with rrms.
I’ve been ‘watching’ with interest about the ‘up and coming’ oral dmd’s as after jabbing myself with rebif for 9 years - a tablet sounds very tempting.
My ms is however very stable on rebif so i am thinking i am better staying as i am for now.
It must be very confusing to the newbies with all these treatments on offer…but how fantastic that there are now choices to be made! Lets hope it’s not too far away that there are choices for spms and ppms also.
SC - i hope i didn’t offend but just wanted to make it clear to the newbies. I am interested in the BG12 oral drug that’s not available here yet - it looks very promising! but…when i asked my neuro about it last year he replied “it is not available yet and you will not get it anyway as it will be too expensive and your ms is not severe enough!”. If it is licenced for a first line treatment i will make him eat his words! lol!
BG12 has a higher reduction in relapse rate than the injectables and is possibly ‘neuroprotective’ as well.
As you so rightly said SC - we want the best possible drug we can get from the beginning! but we so often can’t get our hands on what we want!
Teresa.xxx
Hi, It is so hard to turn down medication when you are faced with the possibility that if you don’t try it you may be worse off. However, you need to weigh up the pros and cons and decide what is best for you (not anyone else - including the medical people).
I was Dx in Dec 2003, when onto Avonex and then Rebif - I could not cope with the side affects of either or the phsycological impact of self injecting. I also found my life was becoming ruled by medication, blood tests and side effects. I became even more depressed.
My relapses were not frequent and I eventually decided to stop all mediation apart from Modafinil and Anti depressants.
The DMD’s do not help with fatigue and fatigue is my biggest problem. They also don’t help with mood swings, cognative ability and general well being. Yes they may prevent relapses or at least minimise them but the relapses are not my main problem.
Every drug has side affects but for me Modafinil (which I had to fight for) and anti D’s help me the most.
I recently had new MRI and was advised to consider DMDs again as MS is viewed as being moderately to highly active. I have not been too well for a while and have had 2 big relapses in the last year/18 months.
It is a lottery … by all means consider trying anything that might help but just be honest with yourself, do you feel it really helps - if not then why bother + manage your MS the way that you want to (we are all different)
Take Care
J xxx
Hi, Yes I am 80% thinking of going for Aubagio but the possible liver damage common side effect concerns me. So its holding me back on fully making a decision. I can live with the hair thinning but possible liver damage?
I’ve been put off a little by the tablet, because if I ever decide to have children I’d have to wait two years for the tablets to clear my body 100% I don’t what’s around the corner or for my ms or my personal life.
Where’s my fairy godmother when I need her
Well this situation I’d getting a but frustrating.
I had an appointment with my gp about my bladder results & it set me off into a tiswos. It feels like I’m struggling with my ms DX when I have to face up to it is doctor appointments.
Anyway I ended up messaging my nurse and saying that I was having a bad day regarding starting on the injections because my neruo has said I can start in them if I want. Anyway my first relapse was in 2005 & then not until 2012, which wouldn’t normally qualify for drugs but my neruo still said I could start in them (which my nurse pointed out, in a way that I shouldn’t worry unless I have another relaspe)
The only reason why I know something was wrong in 2012 was due to pins & needles, which I still can get.
But this year I’ve started to have problems with my bladder, a hit patch on my leg & I’m forgetting little things more often. How can this not be a relaspe? Do I have to wait for a medical profession to say that it is???
BG-12 looks like the tablet I would be lucky to get. It’s available to people in Scotland already I think (?). Its a tablet and hardly many side effects (that they know of). Do I hold out to ask for BG-12 that is the question. The possible liver problems is a concern for me with Aubagio.
Upon reading there are some side effects of Tecfidera (BG-12), nausea, flushing, headche a few more I think but nothing too major has been reported (to date that I am aware of).
I would start i didnt go on dmds now my ms is so aggressive they are putting me straight on tysabri infusions i think having a baby played a big part in progression tbh
My boyfriend has just been dx and i have been doing a lot of research into everything and as you are discussing dmd has anyone tried the drug ldn? I know of a person with ms who was dx with spms after having ms for 10 years and got worse he was advised to go onto injecting drugs but he refused and then he came across the drug ldn and has been using this ever since for the last 2 years and went from unable to walk to now feeling back to normal with no further relapses and has no side affects from this drug ldn and leads a normal life but i cant understand why no one really talks about this drug?
LDN is discussed here, but the problem is that there are no clinical trials to show its effectiveness. If you were to ask 100 people on LDN, you’ll find many differing views.
I took it for 4 years. I had good and bad experiences with it and now, unfortunately it does nothing. I’m no worse off though.
There was a big LDN conference in 2009 and I (re) started it along with my DMD after new knowledge was presented at the conference.
This website is the one, safe (from evangelists for alternative, expensive treatments) place for people to discuss their life with MS. 15 years ago, hardly anyone was allowed to try a DMD (Copaxone, Betaferon, Rebif, Avonex) and now many people who qualify, can talk, ask questions about their drug treatments and the new, more effective drugs, without being told that they are just helpless pawns in the thrall of Big Pharma.
It’s brilliant. We can’t meet up in person, but some of us have met in real life and our experience with DMDs (as well as LDN) is invaluable.
best wishes,
K
Worth remembering that Lemtrada is licenced as a first line dmd and avaliable if you have either mri change or relapses.
Hopefully it will be available on the NHS later this year (nice have approved it)