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Could someone please help me answer this question? Do the CRABs really influence the course of MS? I'm currently on Avonex (1+ years) and am questioning it. Do I want to be injecting myself full of this stuff if it really only slows progression in 30% of people using it? How far from being statistically insignificant is that 30% and is that 30% real-life results or clinical malarky?

Are there any non-pharmaceutical funded studies that point to the effectiveness of this stuff? Show me the way, please?

Thank you and Happy New Year!

VailKin
dxd 1994 Climb on!

Right or wrong I made an 'intuitive' decision regarding the meds. I looked at the statistics and felt that a 30% possibility of slowing disease progression + having to inject myself with a substance that would probably interfere with my quality of life (in the form of welts and flu like symptoms etc) wasn't worth taking.
I was diagnosed approx. 4.5 yrs ago. I am a fish eating vegan - no dairy etc. + no gluten. I take vitamin D and fish oil. Occasionally I take aspirin. I have slept on 4 raised pillows since diagnosis, and recently raised my bed 3 inches. I 'try' not to stressssssssss too much.
My progression has been slow. My MRI since diagnosis is unchanged. No relapse since diagnosis. No visible disability. (Walking is effected in hot weather - some numbness reappears in hands if I over exercise).
But - if I started to have more regular relapses - I would reconsider meds. It's a difficult decision to make.

VailKin wrote:Could someone please help me answer this question? Do the CRABs really influence the course of MS? I'm currently on Avonex (1+ years) and am questioning it. Do I want to be injecting myself full of this stuff if it really only slows progression in 30% of people using it? How far from being statistically insignificant is that 30% and is that 30% real-life results or clinical malarky?

Are there any non-pharmaceutical funded studies that point to the effectiveness of this stuff? Show me the way, please?

Thank you and Happy New Year!

VailKin
dxd 1994 Climb on!

If you ask most MS docs about the CRABs, they will tell you publicly that you should take one of them to try and slow down the progression of the disease.

If you get them to comment privately (and most won't) they will likely tell you that they are very disappointed in the results. What the drug manufacturers told them about these medications in the beginning vs the real results are two very different scenarios.

I can remember some of the comments that were made about the CRABs when Tysabri first appeared with its once every 4 week infusion. These docs made a lot of less than complimentary comments about the CRABs. They were glad that their patients would have the chance to rid themselves of the more often than not bad side effects of drugs that did little to alter the course of the MS.

Now that Tysabri's long term safety use has come into question, these docs now have had to strongly consider putting their patients back on one of the CRABs.

Pretty much sums up the state of trying to treat MS these days.

Harry

VailKin, the CRABs are actually a little worse than how you describe them. They reduce relapses by about 30% on average. They reduce lesions by around 50-70%. It is questionable whether they have any influence at all on progression. Having said that, I've been on rebif for almost 6 years and haven't had any relapses or progression. I don't know if my disease course is in any way attributable to rebif though.

Thanks for the input, folks. Still trying to decide if I'm going to start the new year with the Avonex side effects roulette...

16 years since diagnosis with "benign" RRMS.
Was on Copaxone (6 months maybe - allergic) then Avonex in late 90's for a couple years - some MRI changes in that time.
Had baby in 2002 @40, breastfeed 19 months, then menopause. Minor MRI changes in that time.
2008 MRI showed lots of changes and I lost half my brain to a major cognitive exacerbation with some small physical loss. Went back on Avonex.
2009 MRI showed nothing new after a year on Avonex but the small physical losses still seem to be accumulating. Cognitive issues not changed but not getting worse either.

Doc suggests I'm now SPMS but still says mild - PA says I should have a cane if my balance doesn't improve. Avonex steals so much from me and my family on the bad weeks. I can't predict when it will be bad. My routine is the same every week yet every few weeks it's soooooo bad. What to do? What to do?

FineWhine Chateau Kindel '62