POLL: How long have you used a DMD, or haven't you used a DMD?

[agate]

We all treat MS in different ways. Some try many DMDs, others try none. Some stay on one DMD for many years, some for only a short time.

So here's a poll to see what the situation is here. If you've tried more than one of the DMDs, you can reply for each of them.

No one else can see how you voted.

I didn't list the more recent DMDs mainly because there isn't enough room to list them in the poll window.

[Catdancer]

I've never kept it secret. I was on Betaseron for more than ten years. All was stable. On the advice of a doctor I stopped. Worst decision ever. A fast downhill slide to where I was three years ago....near death. Now on tecfidera. Who knows if it's working. But I'm on it anyway.

[agate]

I've never kept it secret. I was on Betaseron for more than ten years. All was stable. On the advice of a doctor I stopped. Worst decision ever. A fast downhill slide to where I was three years ago....near death. Now on tecfidera. Who knows if it's working. But I'm on it anyway.

Is there a possibility you could go back on the Betaseron?

[Pegakafarmgirl]

Copaxone.. which made me relapse,, then on to other drugs not mentioned,, like, Novantrone,,Stem Cell,,and the one I am on now, which is working,,{kinda}

[agate]

The poll couldn't be set up so as to list all of the MS drugs as well as the length of time a person has taken them, and so I opted to list just the 4 oldest drugs.

If anyone is interested, these MS drugs are coming along thick and fast. Here's a list of approximate dates when each of the currently FDA-approved MS drugs became available:

1993 - Betaseron (interferon beta-1b)

between 1992 and 2000 - Avonex (interferon beta-1a)
Copaxone (glatiramer acetate)

2000 - Novantrone (mitoxantrone)

2002 - Rebif (interferon beta-1a)

2004 - Tysabri (natalizumab)

2010 - Gilenya (fingolimod)

2012 - Aubagio (teriflunomide)

2013 - Tecfidera (dimethyl fumarate)

2014 - Plegridy (pegylated form of interferon beta-1a)

Lemtrada (alemtuzumab)

2016 - Zinbryta (daclizumab)

[stillstANNding]

I've been on Avonex, Rebif, half-dose Rebif and have been on Copaxone for close to ten years (guessing). I have been stable on all of them as far as major relapses. Everytime I changed therapy, it was because of changes on my MRI's.

I think it's important to know about depression w interferons. Not everyone but some. I was one of the some. I felt so good in the first 2 weeks off of Rebif - almost high! I reverted to normal soon enough. I never had depression before or since.

ANN

[Howie]

I've never done any of the DMD, but do take an AD. I think it's hard not to blame MS for every ache and pain that comes along. But even if I didn't have MS, I would still need an AD.

[Virginia]

Agate, obviously Cat can speak for herself about going back on Betaseron, however I will just say that once a person comes off a drug, even if it has worked for them in the past there is no guarantee that it will again. Another reason I am so afraid to let Rebif go even for a little while. When people advocate that it is alright to take a break from the drugs I think they are forgetting this.

[SalpalSally]

I took Avonex Then Copaxone, boTh for less than one year.

[Virginia]

Not long enough for Avonex Sally. We need to have patience when it comes to these drugs.

[agate]

Not long enough for Avonex Sally. We need to have patience when it comes to these drugs.

Things may have changed for Avonex but when I was taking it I believe the information being given out was that it started to be effective after only a few months (3?).

[Virginia]

Agate, I believe you are right - but that is just when it starts or begins to have any effect. I believe it takes longer to show complete and good effects. I know I was told to think of it as a very long term therapy.

[Cat Dancer]

All of them are intended for long-term use. I was told to not expect anything for at least a year. I started on the Betaseron and had an exacerbation 6 months later. I was ready to quit then, but the doctor persuaded me to hang in there. After that, there were a few minor flares, then things settled down. No real improvement...but no exacerbations. Things were pretty steady. There was a slow decline, but nothing really major at all. After the 10 years or so, a new doctor (a quack, as far as I'm concerned), advised me to get off it. "You haven't improved; MS has probably burned itself out..what you see is what you get..". Foolishly, I took his advise..and got off it.

Then. a year or so later, all hell broke loose. I asked my new neuro, who I trust, if I should perhaps go back on to Betaseron. He seems to like the Tecfidera. I've been on it for about 2 years now. It's hard to tell what's happening with the MS, as most of my other health issues are so massive, they've kind of overpowered anything MS related. Maybe now that everything else is under control, I'll have a better feeling for whether the Tecfidera is having any influence.

[agate]

I can understand not wanting to rock any boats.

If I remember right, you were considered SPMS before you went on Betaseron, and it was the only DMD with a bit of a track record for SPMS?

It's hard to say what's "working" but it sounds as if Betaseron was keeping MS quieter for you. Let's hope Tecfidera is doing an even better job.

[SalpalSally]

I went 7 months on AVONEX. SEs made me sicker than the desease.