Victims of the Tysabri interruption...

[ToddwithMS]

For anyone - like myself - who was on Tysabri at its inception and had to go off when it was pulled from the market, you should know that an article just appeared in the Annals of Neurology with this conclusion:
"In this cohort of patients with MS who had disease refractive to multiple therapeutics before starting natalizumab treatment, magnetic resonance imaging and clinical disease activity returned, often aggressively, following discontinuation of natalizumab therapy. These findings suggest we should consider strategies to minimize the risk of immune reconstitution inflammatory syndrome after natalizumab discontinuation."

In a larger sense, it may warrant a deeper conversation with your neuro if you want to either start Tysabri or take a break from it.

Todd

[jazzgirl]

I stopped it, and was warned by my neuro about a rebound effect. I couldn't say whether or not it happened. I always feel funky.

[0485c10]

I read somewhere that rebound effect happened in 40% of patients stopping ty. that means it didn't happen in 60%--but it's got to be a tough thing to happen to the 40%
who do get it and have already used past ms therapies that proven ineffective to slowing ms. the good thing is there are all kinds of new therapies to go to that didn't exist before.

i have read post from one woman who was approved to use ty for a fuirst treatment--after she had decided on ldn instead of one of the crab drugs--much lesion build up during that time--but she wasn't required to use a first line med before starting ty & another man who was asymptomatic for ms, he had back surgery, the mri of his neck showed ms lesions...a following mri showed some lesions in his brainstem and pervintrical lobe----he's starting tysabri first...he's still asymptomatic but understands now why he was so tired. on to tysabri.

so times they are a'changing. i don't think one of the crab drugs have to be used first any more. its tough to get used to that idea after how long i sweated if i was "bad enough" for tysabri.