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.

Hi Vlys. Longtime no see. Have you had any improvements with Tysabri? No exacerbations is a deffinate improvement, but was just wondering if there is any improvement in your MS sx.

Come back and talk to us some more. I miss you.

Thanks Wiz, for telling us your story.

It seems that a lot of us have been disappointed in the ABCRs and a few of us are satisfied with them. That, to me, shows that the 35% success ratio is right on target.

Good luck with the Tysabri. I think it has a better track record for keeping exacerbations at bay. Vlys just reported...no exacerbaions in 7 months, on Tysabri...woooooohoooooo.

Keep us posted, Wiz.

Hi Vlys,

Your med history sounds a bit like mine. I hope I'll do ok with Tysabri too.

I will Sally. If I get a result like that with no daily shots I'll be happy!

Sally,
Honestly I forgot all about this forum!

I haven't had any relapses since I started
Tysabri.
Not a real lot of improvement in
walking but it could be loss muscle strength due
to being less active.
Spasticity is still there & the fatigue.

Tysabri is doing what it's meant to do= less exacerbations!
That I'm greatful for.

A lot of food for thought here. I have been on Avonex since 01. I have only
had a few major flares, but feel really crummy most of the time. I take the
injection Sunday and have fever and chills, aches and spasms thru Thurs.
Friday, Sat and Sun are usually more bearable. Doc says it will get better.
(in my lifetime?) Meanwhile every infection or allergic reaction seems to be
a major setback.

And as I mentioned before, my doc doesn't deal with the day to day stuff.
Threatens (my choice of words) steroids when I complain. That tends to shut me up as I had pretty miserable experience with those and still am suffering the aftereffects with my teeth and bones.

when you feel bad most of the time you forget what good is?Or can't I tell worse? I am thinking that I am settling for too little, but am afraid of change lest things do get worse still. I am barely keeping my head above water now.

I am amazed that so many of you are also disillusioned with the current
choices, thought I was just being cranky. Enuf rant. I need to make calls
on Monday. If I can manage the phone then.

That's pretty much it, in a nutshell, Kami. It's so frustrating.

What worries me is that as long as big pharma can keep us fat and happy on these drugs, they'll never come up with a cure.

Oh Sally

Fat maybe, but not too happy from the responses!