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.

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.

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.

Remember, we're together in this.

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

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!

Hi Sally!

Please forgive my veg-ness, my little brain has very little focus. I jumped in here without answering your original question.

I'm glad that LDN is keeping you from progressing!

Anyway, I am pi$$$ed about the DMD situation. In spring 2003, I started taking Avonex in a clinical trial that lasted 18 months. I had one flareup on that, and my depression officially started at a low level. I felt sick every weekend too. I had a horrible reaction to my first very high dose IVSM treatment.

After the trial ended, I went on Rebif, figuring stronger would be better for me, and the side effects of flu like symptoms wouldn't be as bad. Well, I was on it for five months, and developed severe depression and anxiety. I stopped it shortly after my Dad passed away, in February 2005. I had another bad flare up that spring, more steroids and another horrible time with those. While recovering from the whole mess, I fell and broke my left foot.

I started on Copaxone immediately then. I had another flare up soon after I started, but I did ok, but still had periodic flares. My last one was last fall, and I had significant weakness in my right arm, hand and shoulder. But then again, maybe the back problems would be considered another flare...

On Copaxone my anxiety worsened as did my pain and spasticity. I started on higher AD's and Baclofen.

In November 2006, my neuro offered me a clinical trial for Tovaxin, and I had high hopes for it. I stopped the Copaxone, for two months before they could draw my blood to test for the trial.

Not only did I not have enough MRTC's to make the vaccine, but there was a big concern over my low WBC counts. Lots of fussing about that and retrieving past medical records from all over the place.

So, since I couldn't be on Tovaxin, here I am on no meds. My fatigue has been getting worse, and my anxiety. I have severe back and shoulder spasms, as well as spasticity all over.

I'm trying desperately to finish my stupid Bachelor's degree in business. But the pain is so bad when I sit I had to drop my last class... I have five classes to go, but I'm going to have to work at a snail's pace to finish.

I was recently waiting to go into another new clinical trial for a new oral med called CDP323 which is supposed to be like a pill version of Tysabri. It's only going to be a small phase II trial though.

Last week I saw my neuro and told him to count me out for that because I feel like carp. I want Tysabri and I want it now. And luckily for me, it was easy for me to get, and I should start next week sometime I think.

If I get PML, I guess the doctor can say "I told you so".

So there you have it, the whole story... I just feel thankful that I can still work, but I have a job where I can pace myself and hope it lasts long enough until I have enough saved to retire or go on SSDI if necessary.

I haven't had any exacerbations since starting
Tysabri 7 months ago!

I had previously used Copaxone, Avonex & Rebif.