How many of us use DMDs?

[Jules A]

A comment in another thread got me wondering what percentage of us take a DMD? Just anecdotally I would have guessed maybe 30%.

I found this, anyone else know of any interesting articles?

"Nearly 60% of newly-diagnosed MS patients in this commercial managed care population remained untreated while over a quarter of treated patients stopped therapy and one-sixth experienced treatment gaps despite the risk of disease progression or a return of pre-treatment disease activity."

http://www.biomedcentral.com/1471-2377/11/122

[Thinkimjob]

I always assumed just about everybody used them, at least at the beginning.

I certainly ponied up from the day I was diagnosed. That was beta, and I had to stop when I developed neutropenia. It's been Copaxone ever since.
Yes, there have been 'treatment gaps'. Brain haemorrhages will do that to you.

I'm surprised the numbers on the dmds are so low. Is it because they're so expensive (not here in Australia, $35 a month) or is it because people just aren't keen on committing to a lifetime of injections.

I'd have thought if neurologists really believed these drugs were going to do wonders, they'd be pushing harder. I shall go and read the article now, then I'll know what I'm talking about.

[ru4cats]

I never considered NOT using a DMD, and maybe the fact that I had relatively good insurance made this an easy decision. Before choosing Tysabri, my neurologist insisted I spend 4 weeks researching MS and the various treatment options. I just had infusion 33, and I've never regretted my decision. My MRI's have been stable, although I progress slowly. Would my current condition be any different without Ty? I certainly would not have wanted to take that risk.

[dalechilders51]

I've used one of the DMD's since I was dx'ed. These stats suprize me too. Especially in the new people. It takes awhile to realize that none of these meds are a magic bullet. That being said I still continue with my Ty.

[BigA]

They're not expensive hear either if you're talking about what patients pay. However, the health service in Australia is paying far more and US insurance companies even more.

There are many reasons people do not take the drugs. Traditionally needles and the misunderstanding of how much a 30% reduction really is. It's still worthwhile numerically. However, there is also the pesky fact that they've not actually been proven to do anything for progression and have difficult side effects.

So I take them, but I can't dismiss someone not wanting to. I have always had the suspicion that Doctors have a psychological need for us to take them as well a belief they work - otherwise, they've just been pretending.

[Bob698]

I've been shooting Beta every other day since I was DX'd.
My results are still really good with no signs of progression.

I can almost understand why people will quit or chose not to be treated but I've also kept the big picture clear.
The DMD's don't make us feel any better, for the most part you don't feel them at all besides the random site reactions or bouts with "the flu", so how could they possibly be effective?

The shots also require a bit of lifestyle change. You have to get past any needle phobias and the shots tend to keep you close to home. For some of us its no big deal but I can mostly understand why others elect to quit. I may not agree with them, but I can understand their reasons.

[BigA]

I agree with Bob that it's important to note that DMDs will definitely not make you feel better and you should not expect that. At best they make us feel bad but we hope to arrest the disease.

How can you tell if your drugs have worked? You can't, because you can't see your other timelines with what would have happened.

Lower MRI activity and fewer exacerbations is a good sign, though technically even that hasn't been tested more than 2 years. Whether this has any affect whatsoever on progression has not been proven. Well, Avonex (but not Rebif) was proven to reduce disability within the 2 year trial and Gilenya had the same result. But no one's been able to show anything long term.

[Jules A]

I agree with the many points made about why we don't stay on a medication. I figured our adherence rate would be poor especially because the route of administration although according to this article it isn't all that different from rates for type II diabetes and oral meds for heart failure.

“The majority of patients who discontinue therapy tend to do so within the first 2 years of initiating treatment. In a cohort of 107 of 632 patients who were observed for 8 years (mean, 47.1 months) and who discontinued treatment with IFN beta or glatiramer acetate, approximately 49% stopped treatment within the first 2 years”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2580090/

[Jules A]

I'd have thought if neurologists really believed these drugs were going to do wonders, they'd be pushing harder.

Interesting question. I felt my neurologists were fairly committed to encouraging me to start a DMD although I also understand their hesitancy to push someone who doesn't want to take medication.

I hope/pray the Copaxone is working but can't know for sure especially because so many without medication do well for decades before their disease takes a turn for the worse. Hopefully 20 years from now we will have more answers.

[Jules A]

I have always had the suspicion that Doctors have a psychological need for us to take them as well a belief they work - otherwise, they've just been pretending.

You make a great point about their need for us to take what little they have to offer. I don't think they are pretending just that they truly want to help us and this is all we have right now so they are enthusiastic about it.

I am extremely thankful that we have something to try even if none of them are ideal. Have you read Curing MS? It really hit home with how long and how hard so many brilliant people have worked trying to figure it out.

[onlyairfare]

Seeing as how I had a medical director of a prominent managed care health insurer tell me that he thought MS patients were responsible for the high medication costs because they chose to take expensive drugs instead of less expensive ones, I am not surprised that in an HMO environment many patients don't take DMD's. Poorly informed medical directors like him probably don't encourage more use of expensive drugs.

However, I recall reading an article elsewhere a couple years ago saying that overall less than 30% of MS patients take a DMD, regardless of insurance coverage. With so many insurers changing to a co-pay that is 20 - 25% of list price, I would imagine fewer patients will take DMD's in the future, it's just too expensive.

DMD's are not that great with the 30% reduction in relapses, and are indicated only in RRMS patients anyway. I will say that the daily shots did not make me say close to home. I spent 3 months volunteering in Afghanistan and I still took my shot every day. I love to travel and I am still ambulatory, so I keep at it while I can.

[rdmc]

I didn't take one for about a year after diagnosis...reason, family responsibilities and I couldn't risk being incapacitated by side effects.

But about a year after diagnosis those family responsibilities eased so I started Betaseron and used it for the next 9 years.

Last July I quit, partly because I was experiencing chronic infections ( and the fine print says that can be a side effect of the Beta) and partly due to the study about disability results.

In the Narcoms latest magazine there was an analysis of that study..interesting reading and conclusions..but a discussion for another time.

I will try BG 12...and might have been willing to start another DMD but some MS related autonomic dysfunction issues kept me from trying the other non-interferon DMDs.

So although I'm not on one at present, I was on one for years, and will try the "latest and greatest" when it's released.

[MarkLavelle]

My personal take on DMDs is: Why wouldn't you take one?

Of course there are many reasons , but Copaxone doesn't have any 'quality of life' issues for me and I expect to keep using it until it does.

Having cancer at 40 biased me toward anything that can improve my chances (both chemo and radiation, at the time), and so long as there isn't evidence of damage from Copaxone I'm likely to stick with it.

[hunterd]

I have on a DMD since day one, and I will probably continue to do so. I am surprised that how low the numbers are that represent the percentage of people that take DMD's. Just wanted to add my two cents ( you can now give me my three cents change back).

[Cira]

I'll be starting one once it's set up. I did give it serious thought, but I knew all along that if/when I got the dx, I would at least try. I'm on my 3rd relapse in about 8 months (at least as far as I can figure - maybe I'm still on number 2 & it never really ended before sx's got bad again?) Either way, in that time frame, I've had more bad days than good ones & it has really affected me. If there's an possibility of keeping me relapse-free for a longer period, I feel I need to try it.