Coincidence?

[msconductor]

I had my first Tysabri infusion yesterday. Had a headache throughout most of the day, not a big deal. However, I wake up today and have numbness and tingling on my entire left side (which is consistent with past flare ups). I was on Rebif prior to Tysabri and didn't have much of a wash out period before starting; which leads me to believe that a lack of a medication in my system is not the cause. Surely the introduction of Tysabri in my system would not have anything to do with this, right? Thoughts? Thanks!

[Tomjadg]

Sorry, but I think this is more of a question for your Neuro.

[hackwriter]

Tell your neuro before your next infusion

I took Tysabri for a year, and on infusion day, the nurse always asked a long list of questions about symptoms worsening or any kind of side effects I felt since the last infusion. If I answered "yes" to any of the questions, I got sent home and my neuro was called. If the neuro okayed more infusions, the appointment was rescheduled.

In short...call your neuro right away and report this before your next infusion.

Kim

[cocogirl]

You need to let the infusion nurses know what you experienced and also the neuro.

Thankfully my neuro, MS specialist, is across the hall from the infusion center and if problems come up at that time, he is right there checking it out. This gives me great comfort. Please call them!

[Lendi]

I agree with the others. I'd check it out as well just in case. Erring on the side of caution is never a bad thing, IMHO.

[0485c10]

coinidence happen. if it last more than 24 hours call the neuro to report a relapse..is it possible this terrible heat has anything to do with a psuedo flare? not sure where your located but from the news there has got to be a lot of MS psuedoflare happening in the NE USA.

if the weird coincidence did happen and this last for 24 hour when all other factors that could be causing a psuedo flare are removed and the symptoms persist, let the doc know so steroids can be started and completed before your next infusion if both you & the doc want to treat it with steroids.

on the good side no one has gotten PML in the first 12 months when tysabri was used to treat MS--so the worst it would be is a ms relapse.
the unusual,unexpected, coincidental happens sometimes...& it might have happened to you.

[0485c10]

And if it clears up in 24 hours or after anything that could cause a psuedo flare is remove tell the doc or the ty nurse before your next infusion....i think the first neuro appointment is at 3 weeks when first starting, so you will be able to tell him before the nurse during a scheduled appointment? but if i'm wrong about that and you see the ty nurse first during your next infusion be sure to tell her what you experienced, if it doesn't last more than 24 hours and you don't have to report a relapse to your neuro.

[0485c10]

You know Rebif only slows relapses by 30% so perhaps this is a relapse you would have gotten without a dryout period but if you had stayed on Rebif the entire time.

Damage that was done while on rebif won't be reversed by tysabri. tysabri will just prevent new damage from happening once tysabri is up to full effectiveness in about 3-6 months. i forget how long it is until tysabri reaches full effectiveness? so even without a the effects of a long dryout period you are dealing within an MS turbulent time--from a period of a less than needed effective ms drug(which is why you switched to tysabri?), to a dry out period, to a start up period with a new drug before it has become fully effective in you.

is there any way to expect what will happen for anyone during this turbulent MS period?