DMD's do they really work?

[autotech]

I am still confused and in a holding pattern on starting C. Neuro wants me to start, I want to wait for a oral, and I think I can do it.

My MS so far has been very slow, but what I am wondering is, how do you know if a DMD is really doing the it's job?

Even though I am doing well right now, should I get going with a DMD for insurance against the MS worsening?

[Redwings]

That's a good question. Based on some of the posts and threads here about DMDs, you're probably going to get some unsubstantiated opinions about how DMDs don't work and haven't been thoroughly tested and the research is flawed and nobody really knows anything about them, etc. Other olks criticize the DMDs because they don't do things they aren't marketed for and were never intended to do.

After years of clinical testing and post-market research on thousands of patients, clinical data shows that they do work in a limited yet well-defined way to reduce the relapse rate and slow progression of MS. Research also shows that the sooner someone starts on a DMD, the better their outcome. The consensus among MS experts is that MS progresses even during asymptomatic periods.

However, there are limitations to clinical studies. Studies show the overall outcome of a test group in comparison to the overall outcome of another test group. (The initial studies were med vs. placebo; some later studies have been med vs. med.) Studies can't predict what the outcome will be for any individual. They can't predict who will do very well and who will have side effects or otherwise won't do well on the med. That's true for ANY med used for any purpose, not just for DMDs for MS.

It's that unknown for any individual that has some people feeling like the outcome is unknown for everyone and that we're all just guinea pigs no matter how long the meds have been on the market. I think that's taking things too far in the other direction. These meds have been on the market for at least a dozen years and their effects are well-known.

The meds aren't being tested when we take them. Rather, we're being tested to see how we do on them. But that's true of anything in life. Just because I can't drive an Indy car at race speeds and keep it on the track doesn't mean there's anything wrong with the car.

Perhaps the bigger unknown is how MS is going to progress in any individual. Some folks who have never been on a DMD continue to do well without one. Some folks who thought they wouldn't need one find out too late that they should have at least tried one. Others try every med on the market and still continue to progress. Once on a med, there's no way to know what progression would have been like without one. At best, they have to compare pre-med relapses and progression to post-med status. There's no way to predict what your individual results will be on a DMD, but testing shows that you'll have about a 33% slowing of progression -- whatever that progression might be for you.

So, as much as you'd like a nice, tidy answer to help you decide what to do, you may need to do the research yourself. When you find out what's actually known about the DMDs and what the trade-offs are, you can decide for yourself if it makes sense for you to be on one.

One thing you'll have to decide is how much risk you're willing to take for a case of MS that is progressing slowly. The side effects of Copaxone are well known and considered to be mild. That's a reasonable trade-off for a "slow" case of MS. If you decide to hold out for an oral, you have to be aware that the risks of adverse events is much higher. There is a possibility that you might end up with side effects that are much worse that the effects of the MS you're treating. If the treatment is worse than the disease, you'll have to consider if the trade-off is worthwhile.

[CocoH]

Redwings nailed it

I think Redwings gave you some great info/advice & things to think about.
It took me a VERY long time to decide if I was going to take a DMD. Now, I've been on Rebif for 5 weeks & am glad that I made this decision. I feel like I'm at least TRYING to do SOMETHING about this disease.
I recently went to an MS dinner & the neurologist that spoke has been practicing for 40 yrs. One of his comments was that in the 1st 20 yrs of his practice he prescribed many wheelchairs and walkers and had several people (with MS) in nursing homes. He could do nothing for them but offer support. Then, he said, that in the last 20 yrs (since DMD's) he has no patients in nursing homes & very few wheelchairs. Something to think about.
If your decision is to start a DMD, I wouldn't WAIT for the oral. Best wishes to you.

[roo613]

Redwings' post is spot on.

For me, I couldn't risk getting years down the road and wishing that I had tried the drugs. So I am doing what I can to fight this disease. And, if this med works (I'm on Rebif), then I will probably stay on it before switching to an oral with the possibility of some pretty bad side effects. Now, if these injections don't work, then I'll be willing to try an oral.... But that is just me.

[lovejoy]

I tried copaxone and it didnt work for me, so i moved on to doing chemo , if that doesnt work then i will try tysabri and if that doesnt work i will try whatever i need to guess its kinda like the mocking bird song but its totally your choice but just make sure your well informed in all points

[Splendid]

I guess you could say my MS is progressing very slowly, however, I have over 9 lesions on my MRI before I ever had a symptom that was concerning. The MS was attacking my brain, but I never knew it.

I believe that there are brain changes from this disease that do not show up on MRI...that is why so many have symptoms and a normal MRI, or no changes in the MRI, etc. So using a DMD in hopes to slow this process makes sense to me...even though I am relatively healthy at this point.

I need to print off and post REDWINGS reply on my frig. It provides all the reasoning I need every time I start to question!

[RoyalOne]

There is no doubt that Avonex worked for me. I had several relapses before Avonex and none in the over fourteen years on Avonex. I figure I'd be in rough shape had not used the DMD.
Like others have said, they don't work for everybody. But if you don't do it and get significantly worse It will be too late. I suggest trying.
- Roy

[Chais Papa]

Copaxone has a 10 year study that roughly says you can expect a lower frequency of relapses and something like 70% of users were still able to walk. I have been using C for about 10 years and my last MRI stated "no active disease".
But like the others before me said, everyone is different.

[BigA]

What's a little unpleasantness in exchange for the ability to walk? That's easy.

How about definate unpleasantness with only possible and only moderate effects? That's more difficult.

But I'm still willing to try. Trying and failing is usually better than not trying at all. I think once you accept the disease, you accept the DMD. You just really have to get that you have this disease, even if you feel just like your normal self after recovery.

My lasting symptoms remind me I'm sick, lest I forget and imagine I'm well and pretend I don't need the meds.

P.S. most people don't know what they're talking about, so evaluate everyone carefully.

[ewizabeth]

What's a little unpleasantness in exchange for the ability to walk? That's easy.

...

P.S. most people don't know what they're talking about, so evaluate everyone carefully.

Big A said a lot there. I'm on Copaxone now for over two years and it has worked the best for me. It's not worth the gamble to wait and see if I get bad MS symptoms before starting the meds. Because the DMD's are meant to help keep that from happening.

I took the interferons for two years and Tysabri for almost 3 years but I'm back to the one that works for me. I have the least side effects and it's keeping me working. We're all different so don't expect the same results.

As soon as I was diagnosed I wanted to be on a DMD. I'm not a gambler when it comes to MS.

[skeezix]

My 2 cents.

At the end of the day, YOU have to make the decision to use DMD's or not to.

It may be beneficial to get opinions of others, but remember they are only opinions.

Do your research! It's your life...your journey with MS, and your responsibility to do what you think is best for you.

[Salvatore]

For the amount of money you need to fork out, and the side-effects that come along with certain DMD's, I honestly don't think they are worth it. Yes, some people have had excellent results on DMD's, whereas others have gotten worse, and other people have had no change. They are only believed to maybe reduce relapse rates and slow progression.

Although if MS is truly an auto-immune disease, one would believe that suppressing the immune system would stop any further progression, albeit at the expense of a very vunerable immune system. This is not the case, and why I believe MS to be a multi-factoral disease.

[Salvatore]

Also, if the disease was purely auto-immune, every patient would benefit from the DMD's, not just a minority. The DMD's would have a higher efficiacy rate than 30% on the people that they actually work for as well.

[MelissaQ]

How incredibly much my mother suffered from MS had played a big part in my decision to be on a DMD. And I am not even "officially" diagnosed yet. (CIS) I have seen first-hand the absolute devestation that MS can do to someone.

I know not everyone gets so sick and so diabled but my mom had one of the worst cases that her doctors had seen and lived much longer than she should have. She couldn't walk, couldn't move - period, couldn't see - was blind from the optic nerve destruction, had hearing problems, couldn't swallow well, couln't do ANYTHING. She was literally just a skeleton with skin. This was all caused by her MS. And got worse and worse until her death at 62. She weighed less than 50 pounds - totally true, and actually had been at that weight for a couple of years.

When my symptoms came in the picture and it was thought that I may have MS, you can't believe the terror I felt of that possibly being me one day.

My dr gave me the choice of taking a med now or taking the wait and see approach - and you can bet that I already had the meds researched and one picked out as soon as he said the word. I couldn't wait for my Rebif to arrive, and then couldn't wait to get instructions on how to self-inject.

I will always respect everyone's individual decision on meds or no meds, but for me - I am going to fight tooth and nail to make sure MS does not do to me, or even come remotely close, to doing what it did to my mom.

Sorry if I sound so dramatic, but this is what I know of MS. my mom was sick my whole entire life. So I don't mind a little jab of a needle 3 times a week. Not at all

[SNOOPY]

I will always respect everyone's individual decision on meds or no meds, but for me - I am going to fight tooth and nail to make sure MS does not do to me, or even come remotely close, to doing what it did to my mom.

Hello MelissaQ,

I am sorry about your mother

I also understand why you would want to be on a DMD. Sadly, even with the DMDs, there are people who end up like your mother.

Those of us that choose, for whatever reason, not to use a DMD are also finghting tooth and nail. We are just doing it differently.