I must admit i was not keen on injecting, but the need to out weighs the fear. I chose avonex on the basis it was once a week. But the down side to that is your taking the full week in one jab, making the side-effects possibly worse. Their is some evidence that avonex slows the development of ms. Before i started avonex i was having a relapse every 3 to 4 months and im nearly in the 3rd month now. Will know soon if its working.
On copaxone it is unclear if their is any effect on the development of ms, it will only reduce the number of relapses.
I want to reduce my relapse rate as this last one has left damage…I have heard from people in DMDS on here he went from having three relapses a year to none for four years, some longer? In not having a relapse I feel that affects in someway the progression, I.e had I not had this relapse I would not be struggling with my left leg. If there is a chance this will help then I’m up for it. I have a three year old to think about. He’s my life! X x x
The discussion about whether a particular DMD (or any DMD) slows the development is one that comes up here quite regularly.
Some people argue that it can only be said to have an effect on disease progression is if the lesions are getting smaller.
The alternative argument is that if a DMD has a beneficial effect on the number of relapses, or the severity of relapses, then it must be affecting the course of the disease.
It is all playing with words. If a DMD helps, then it helps. End of story.
One problem is that some people expect one of the recognised DMDs, or one of the off-licence treatments, to
actually cure MS; trust me on this one - it will not happen.
Al the interferon-based DMDs and Copaxone make the same sort of claims - a reduction of roughly one third in the number of relapses for a majority of the people taking them. We are talking averages here, so if I have my relapses cut by way over 60%, and the next person does not find a difference with the same treatment, then the averages are pretty close to the claim. What a small sample of people (like two in this example) means is that there is no way of controlling for a period of remission that is a) spontaneous, and b) goes on for a long time.
Either way, this is getting away from vicki’s fear of needles, and that is something that can be dealt with, to produce a positive result for her. The question is whether vicki wants, or needs, a DMD badly enough to go through the hassle of fixing her particular phobia.
But copaxone won’t slow down the progression of your disease. Doesn’t that matter? I think there’s something I don’t understand about this discussion. I don’t have a needle phobia but I decided not to go on copaxone or any of the interferons because they don’t slow down the progression of MS. I can’t see the point in them - could someone please explain? Is it that your relapses are so bad/frequent that it is worth injecting yourself to go from 3 relapses a year to 2 relapses a year?
[/quote] I don’t understand this viewpoint…surely if a DMD’S reduces the risk of future relapses which can leave disability, then they absolutely ARE slowing down the progression of the disease. Surely that’s why they are called disease MODIFYING drugs. The point of them is exactly in the umbrella title and as far as I’m concerned, ANYTHING that has a chance of slowing the progression of this awful disease, down, is worth grabbing with both hands.
[/quote] I don’t understand this viewpoint…surely if a DMD’S reduces the risk of future relapses which can leave disability, then they absolutely ARE slowing down the progression of the disease. Surely that’s why they are called disease MODIFYING drugs. The point of them is exactly in the umbrella title and as far as I’m concerned, ANYTHING that has a chance of slowing the progression of this awful disease, down, is worth grabbing with both hands.[/quote]
Hello,
Their is no eveidence that copaxone has any impact on disabllity progression. But their is evidence that other dmd’s slow the progression of disabillity. But all reduce relapse rates by a third on average.
I must admit it was very dificult to chose between the dmd’s, its easy to see why now.
This is where I get stuck !! In my case the relapse has caused the disability ergo if I can reduce relapses, it leads that the chances of subsequent disability is also reduced. I really don’t care if its a third, a sixth, an eighth or even less, I just want to be able to say, in the future, that I did something, no matter how small, to reduce progress, no matter by however a small amount. With the amount of problems that this relapse has left me with, any reduction at all, is better than the none that I had pre Rebif.
You can get steroid in tablet form, side effects for me are horendous ill never willingly take them again
There are MS treatments in tablet form I asked about it at my last MS clinic appointment but she told me as my copaxone is stopping the big relapses I did not fit the criteria, I just thought great ive got to carry on injecting for foreseable, you never know if you dont ask you dont get so if you ask at your ms clinic appointment ill keep my fingers crossed for you.
Agree 100% with you Mrs H…I am not massively affected , touch wood, however the simple fact my leg is not as good since the relapse in January makes me know 100% if I can avoid anymore relapses (and possible further deterioration) via DMDs I will…for my three year old and my family! I’ve always been a believer in no meds unless its necessary! I go to too many people in my job who do not help themselves and I won’t be like them. Sorry Vicki if it feels like your post has been hijacked…as I said phobias are serious and Geoff offers some good advice hun. However also ask about that oral pill and keep us posted. I will be asking too as given the chance I would prefer oral to injection. Think we all would x
On the MS research blogspot run by Barts they gave precentages for oral DMDs- see 9/3/13 and 30/5/11. They considered reduction in relapse rate (RRR) and reduction in disability progression (RDP). All DMDs have side effects. The drugs considered were
BG12 RRR53% RDP38%
Cladribine RRR58% RDP33%
Fingolimod(Gilenya) RRR54% RDP30%
Laquinimod RRR23% RDP36%
Teriflunomide(Aubagio) RRR32% RDP30%
Only Gilenya is available in the UK at the moment. Aubagio is likely to be licensed for use within the next few months, but it’s only about as effective as the interferons and Copaxone, and NICE may not fund it depending on the price. BG12 is trying to get a licence to but Teva, the company that maufactures Copaxone, has sent a letter to the regulators saying that they shouldn’t as plenty of effective DMDs already and it has side effects. Cladribine was withdrawn by its producers due to side effects. Laquinimod may be trying to rebrand itself as a neuroprotective as not great on relapses.
Hi there, yes I think most, if not all, availble dmd’s are injectable. I currently use Avonex. I started off fine with the whole idea of injecting (despite the initial horrendous side effects) it’s only in the last few weeks that I’ve started to have a problem with it, strangely enough. I use the Avonex pen and I think it may have something to do with the fact that you can’t actually see the needle, so when it comes to pushing the end of the pen to inject, I suddenly don’t want to anymore and the anticipation of the hidden needle plunging suddenly into my skin makes me very anxious. I always get there in the end but I need alot of distraction e.g putting the tv on, talking to my hubby etc. For the first six months I was fine about doing it, so I don’t know where all this sudden anxiety comes from.
Having said all this I am very much looking forward to sampling the new tablet DMD BG12 (info above). It was due to come out some time this year, so I feel a little disappointed to hear that a spanner has been thrown into the works (see above). I had heard that the non serious side effects can last a few weeks (while your body gets accustomed to it) e.g. flushing and stomach complaints but then they usually go away. From all that I’ve read about it it sounds great and has some of the best statistics regarding reduction in relapse rate and disability progression. I find it strange that the producers of copaxone have complained about it, as it is made by the firm Biogen Idec i.e their competitor. Are they worried that it will out perform all the other DMD’S I wonder?..just a thought.