Ok this may sound silly.......

[kewi1976]

But has anyone ever been on DMD's then stopped and had a bad relapse or anything?

So my dr pulled me from the Avonex and is now wanting me to Copax ( which i have before). But it was har enough dealing with once a week shots, now EVERYDAY SHOTS?????

So, my conclusion is to not take anything until 2013 when BG12 is hopefully available.

I have been on Avon faithfully for 10mths (thins round) and have not had any major issues physically.

Think I can ward off any flares until the new year???

[jbell2435]

Why is doc doing this?

1st - No haven't ever stopped dmd's b/c I just started in January...but wondering why the doc wants you off Avonex if you have had no issues??

I'm not sure I would risk being without something, but just had a big flare while on Copaxone, but it was too soon to say it's not working for me...good luck.

[jessiesmom]

Taking a break from Rebif

I have been on Rebif for about 6 years. I went 4 years then took a break for 1 year and have been back on Rebif for 1 year now. I took a Rebif "sabbatical" while I was being treated for another major non-MS related illness. My neurologist and the other treating doctor were aware of everything I was or was not taking. The neurologist was not pleased but he understood my decision to take a break from Rebif.

During my break I was fortunate enough not to have a flare/relapse of any kind. I always felt though that I was playing with dynamite and that the situation could blow up at any time. It was taking a calculated risk. There is no guarantee that you will be able to "ward off any flares until the new year." I am not certain why you are considering taking a break from Avonex when you admit that you are having no major physical issues. Why take the risk of further demyelination that cannot be repaired? It sounds like your issues are primarily with your dislike of self-administered injections. I don't think any of us really likes it but it is just something that is done in order to give us the best chance at a quality life.

Let us know what you decide to do. Good luck.

[jessiesmom]

Part II - My response

I just read another post of yours in which you discussed some very serious issues with depression. Now I understand why you might want to switch from Avonex (an interferon) to Copaxone (glatirimer acetate). I would still be unwilling to be totally without some form of a DMD until 2013. You mentioned having children. Do it for them. They need you. My children were 13 and 15 when I was diagnosed. I need to be as functional and healthy as possible for myself AND for them. Just do it.

[Redwings]

But has anyone ever been on DMD's then stopped and had a bad relapse or anything? ... Think I can ward off any flares until the new year???

Hi kewi:
Across the Internet are stories of people with MS who had relapses -- some severe -- after stopping a DMD. Also, if you look at data from clinical trials, the groups of untreated/placebo subjects seem to have at least one relapse per year. (In the Rebif trials, only 15% of the placebo group was relapse-free at the end of two years.)So based on that, maybe you can get by without a relapse for a year, maybe not.

It's important to remember that, in the original trials, Copaxone didn't show any difference from placebo until the three-month mark. The performance curves show that it takes Copaxone about six months to reach maximum effectiveness. That already will take you until 2013.

"Warding off" a relapse for a year or more without treatment will require either complete luck or extraordinary lifestyle changes that hold no guarantee.

[knuckle]

DMDs don't cure the disease, just slows it down, maybe.

Most people with RRMS transition to SPMS in 10-12 years regardless of the DMD.

[Cat Mom]

IMHO I am too terrified to take a chance with no DMD. My kids have seen me in really bad shape, especially in the couple of years after dx in 2005. It was heartbreaking to watch THEM go through it.

I will do whatever I can to minimize the chances of an attack, I worry that it could be the attack that I don't come out of = no DMD. It would be even more a shame since new drugs are coming out all the time it seems.

Although I am a bit biased for Copax since I have had a positive experience on it since 2007, if it wasn't working I think I'd still try another DMD. I understand you have other serious health concerns so I know it's probably not that simple for you. I really hope you find the right balance so you're not sacrificing 1 illness for the other.

Please keep us posted on your decision.

Jen

[BigA]

Any reason you're not considering Gilenya while you wait for BG-12?

Also, why not try copaxone and see if you tolerate it. You're always free to stop. One thing is that you won't get any flu-like symptoms, so even though it's a daily shot, it might not be as bad as it sounds. There is also an auto-injector and an extremely small needle.

[debz330]

I too was taken off of Avonex and just recently put on Copaxon. For me it was because I was having some not so nice side effects from they Avonex, such as hair loss, ect. but non the less I too was concerned about taking injections daily, but it really isnt that bad infact it is alot less painful in the aspect that Copaxon is subcutanious {under the skin} as opposed to intra muscular which as you know is not exactly the most pleasant of experiences. I wouldn't think taking a year off any medication would be a good idea but maybe you need to talk to your neuro about your concerns and he may be able to recommend something else for you that may work or ease your concerns. Hope this helps