When do we consider a DMD to have "failed"?

[Cira]

I know this is ultimately a question best answered by my doctor, but I'd like some thoughts & input before I see him again in December.

My old neuro started me on Rebif when I was dx'd in January. I switched neuros and saw my new, current one in June. He is a huge advocate of Tecfidera & asked me what if I had considered it at all. I told him that I had read about it & followed it's trials and FDA approval, but that I hadn't thought about it much for myself at this point since I hadn't been on the Rebif very long. He gave some info on Tec, told me it was up to me & that if I decided I wanted to try it, I could call his office & he'd make it happen. In the end, I decided to give Rebif a fair shot and see what December's MRI shows, then talk about it more at my appt.

I'm currently going through a relapse, my second since starting Rebif in Feb. When I spoke to my neuro's nurse to get my Solu-Medrol set up, she said he was asking about whether I'd thought about Tec any more. He didn't push, which I had sort of expected, but he did obviously ask. I'm just wondering if he will push to change meds in light of this new relapse. I know interferons aren't a quick fix, which is why I wanted to give Rebif a chance. I'm not opposed to changing & would not miss injections at all, but I hate to jump the gun since I've had nearly no side effects from Rebif. But at what point do we consider the therapy a failure? What have other neuros done? Any thoughs, advice, experiences? Thanks, everyone.

[Marco]

You've certainly asked a loaded question that I am not qualified to answer. I'll go ahead and give you my opinion, but it's certainly not a medical, scientific or expert opinion. In general, if your lesions/flares/disability frequency and levels are either decreasing or stable your medication is considered to be "working." There may also be some relevant information posted here: http://www.msworld.org/forum/showthread.php?t=129748 that I am not going to repeat.

Many medical conditions have specific measurements that can be used to gauge treatment effectiveness using nominal, ordinal, interval or ratio scales. Other diseases have a known cause and the medication interaction action is clearly understood.

Examples: Blood pressure medications have distinct values that can readily be charted to determine the qualitative benefit of the medication. An HIV test will come back true or false (positive or negative). The JCV index results will come back as false true and if true an interval scale can be performed.

Multiple Sclerosis is simply a different animal, without a known cause and an unpredictable course. Our medications may or may be effective to an individual and some may even be detrimental to a specific group of patients. That is what makes this question so hard to respond to.

1. I believe you need to have an understanding of your MS activity level. This is where tracking your symptoms in a journal or electronically can really help you. You can use a calendar, notebook, journal or even a website like http://patientlikeme.com to help you track symptoms and events. If you keep daily logs, I would try to summarize the month so you don't have to pour through every single day to identify milestones.
2. You need to understand what your medication could, should, should not and might do. This includes potential side effects, how long it may take to become effective, etc.
3. You need to determine since starting the medication has the disease progressed and at what rate. Compare the rate of progression to what is expected or what is reasonable. The longer you have had MS and the more active your MS is lends itself to making better before and after comparisons.

Examples:

A- If you have flare ups every 6 months for the past 4 years you have expectations your MS progression can easily be tracked like clockwork. After starting a new medication, you are only have 1 flare up every other year you are going to celebrate.
B- If you have a flare up every 4 years, or 1 new lesion every 5 years it's going to be a while before you can fully appreciate what, if any, benefit you are getting from your medication. Even a decade later the picture may be clouded.

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You've only been diagnosed and on therapy for less than one-year. I'm also a big Tecfidera advocate, but that doesn't mean everyone should be on it. Patients should be careful before leaving a therapy that has been working for them. With such a short MS history it's really hard to know what benefit Rebif may be providing. There is also no way to know how you will individually respond to Tecfidera.

I would suggest that you look at your available options and decide what may be the best current medication for you.
Do you have confidence in Rebif? If so, hold out and see how your body responds next year. If you do not have confidence in Rebif, then consider all of your available options and then have a discussion with your your neurologist. It is YOUR body and you need to be comfortable with your treatment options.

I would just caution you to not hop around doctors or medications too frequently. The goal is to find and build a long-term relationship with your neurologist and your medication. That doesn't mean you shouldn't consider future changes; just that there is value in consistency and stability.

I hope you will keep us informed about your medication decisions and how you are doing.

I wish you well...

[cranberrysauce]

Great question!!

Here's the gist of what my neuro told me: it depends on the patient

But, early in MS, my neuro is less tolerant of relapses and pushes to change them. Basically, if I can tolerate the side effects he wants me to try them a year. If I'm having relapses then its time to change. There are so many drugs now that when you're early in your MS journey, you have a lot of options, so we might as well try them.

I am 4 years into this thing and on my 5th drug. I did betaseron for 2 years but after 3 relapses we switched to Copaxone. I did that for a year but had a major relapse. Decided it was time for the big guns and wanted to do Tysabri. I took 2 doses but had an allergic reaction during the second so I tried Tecfidera. I tried it for 2 months and flushed every day for 3 hours. I couldn't deal with it anymore so I just started Gilenya. I'm two weeks in with no issues, so I plan on doing this for a year minimum to give it a chance.

Now that I have tried a lot of drugs, I did ask him what we'll do if Gilenya doesn't seem like its working. I could always try a "failed" drug again.

I think each doctor will have a personal take on this. Its very subjective but I'm very happy with my neuros approach. It makes me feel like I'm giving it an active, aggressive approach. The overall goal is to find one drug and stay on it for years!

[Mamabug]

When my MS Specialist switched me from Betaseron to Copaxone, she told me:
"If you are having one relapse per year, I consider your DMD to be only borderline effective. You aren't even borderline."

I used to have 1-3 relapses per year. Each one resulted in a hospitalization that lasted one to three weeks long. Since being on Copaxone for 5 years, I have only had one hospitalization (3.5 years ago), and, during a stressful time, 2 additional additional relapses, that were quickly and easily controlled and halted by steroids. It has been more than 2 years since I've had any relapse.

~ Faith