Are We Happy With Our MS DMDs
 

Everyone is on something different and some are not on anything. So How Happy or satisfied are we.

I tried Avonex and Copaxone in the past and I just kept having flare after flare after flare and progressed right along to SPMS. So, needless to say, I was not happy with that.:mad:

Four years ago I discovered LDN (Low Dose Naltrexone). By that time I was already SPMS, so I haven't had the miraculous results that some PwMS have had, but enough improvement and NO progression, that has kept me on it for these four years.:D

From what I understand, the ABCRs, Tysabri, Navatrone and many of the new MDMs are supposed to reduce MS flares(exacerbations) and thus slow the progression, about 35% of the time or in 35% of the people?? Not good odds but better than nuttin.;)

So, how is your DMD working for you? And if you are on no DMD, how is that working for you? And, if you are in Trial for a new MED, how is that working for you.

Are you Happy or are you Pi$$ed and not going to take it anymore.:D

Remember, we're together in this.:grouphug:

Boy, Sal, you really struck a chord with me on this one. I've been on C for the last 6 or so years and I swear that it directly coincided with my new thrust of progression. It's as if the minute I started on it, this long, slow downhill slide took over.

I haven't had any major attacks on it, but I just keep getting steadily worse. My attacks were all massive, and many months at a time. It's so hard to know when there is no conclusive way to determine what it is or is not doing for/to me.

I hate the not knowing.

I have never used the DMDs......now how many times have many of you read that:p

I have been at peace with my decision for a long time. Diagnosed for 21 years and I have had 5 exacerbations in that time.... I have been darn lucky with this disease.

I don't think the DMDs could have improved on my rate of relapse and that is exactly what my neuro told me.

Am I happy or sad with my med choice? Neither. The only thing that I have to go on is that I've small attacks and recovered. Dunno if I can attribute to or blame my med for that.

Well Sally, all I can say is I've tried Beta, Tysabri, and Copaxone. I was still having a lot of exacerbations will good recovery after each other, but no new lesions. Copaxone was a disaster for me. Major major fatigue. So that was not an option to return to after Tysabri was pulled.

My MRI has been stable since my dx in 2001. No explanation for that except maybe they aren't showing up YET!

So since my insurance company in their infinite wisdom decided that Tysabri was too expensive and disallowed it for me, I chose a different path - the clinical trial path of Tovaxin.

I am very happy with my choice and have a year to find out if I am on placebo or the real thing since it is a double blind study. Once the study is unblinded, we all have the option of receiving on year of free drug.

In the meantime, I am hoping for a reduction in exacerbations! One less per year would be great! Fewer IVSM in this poor body is what I asked for from Santa. So far, so good! ;)

Good question!

Hi Sally,

I've tried Avonex, Rebif and Copaxone. The first two contributed to my depression a LOT. I was miserable on them. Copaxone increased my pain and anxiety. I have been slowly getting worse in the past 4-5 years.

Today I signed up for Tysabri. I hope I do ok on it. If I do, I would like to stay on it for maybe two years, and then maybe switch to one of the newer meds when they start getting approved.

Campath is supposed to be another really good one according to my neuro. That's a once a year infusion and has had spectacular results compared to all the others. There's supposed to be a trial starting late this year (I think.)

I have tried A, C & R in that order. With A & R had such prob w/fevers that it wasn't worth it. I stayed on each for 6 months.

In between I tried C along with Imuran. As posted elsewhere today, C caused so much body dents that after a couple years I was taken off and stayed on the Imuran.

I stopped when I moved out here. Suffered through R in 2/06 thru 6/06. After 1st exacerbation in nearly 6 years. I took generic tylenol every 4 hours (yes I set an alarm) day and night to keep fever at bay on R.

After a year with several episodes that flared and recovered got doc to put me on Imuran in 12/06. I've still got intense hand pain that has not been relieved, yet.

Congrats Wiz on the Tysabri! ;)

Thanks Cheryl,

The doctor was extremely disappointed with me dropping out of the CDP323 trial waiting list, but he'll get over it... :nopity: :rolleyes:

BTW, I sent you a PM.

I began the journey with Avonex. I was happy to be on that until my liver tests started coming back with elevated ALT and AST. Also, it wasn't helping to minimize lesions showing up on MRI.

I switched to Copaxone. I was really happy with that until I started (only recently) to notice the body dents. I've only been on it a year. It does appear to be doing the job it's supposed to do however, with regard to staving off exacerbations.

That said, I don't like that my choices are: 1. ruining my inside-body by damaging my liver, or 2. ruining my outside-body by creating deformity.

I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

becca44