22 months on Tysabri

[Marios325]

Dear all, just did my 3rd MRI since I started Tysabri. No new lessions for 22 months and most of the old ones have reduced by over 50%. It is definitely working even though I had my doubts lately (increased spasticity, TN pain and finger numbness, thought I was having attacks and was worried about PML). What is weird is that my right leg and right hand continue to be as bad as before even though there seems to be a big improvement seeing the MRI. Any ideas why this is happening? Shouldn't I see clinical improvement of symptoms?

[lindaincolorado]

Hi Mario and welcome
Tysabri doesn't claim to help with symptoms (sx) but for many it does. It did not help my leg move (think this is because the lesion is in my spine) but it did give me better balance, less fatigue and more stamina-so it increased my QOL.
It claims less relapses, slows progression and better/good MRIs at least twice as good as other DMDs. According to a report I read in the Narcoms magazine it's efficacy is still higher than Gileyna from the phase III trial.

Best wishes

[Marios325]

Thanks Linda, just assumed that since it is causing Remyelination, it should also affect symptoms positively?? Oh well, happy to control the damage done so far at least, with tysabri.Marios

[0485c10]

Thanks Linda, just assumed that since it is causing Remyelination, it should also affect symptoms positively?? Oh well, happy to control the damage done so far at least, with tysabri.Marios

tysabri doesn't cause remylenation, it just slows down demylenation. with the ms demylentaion slowed down the body is often able to remylenate some but not all--so some damage is left.

i'm curious about this also--because ms damage is part inflamation(relapses & lesions) and part damage directly to the nerve(neurodegeneration) which is more pronounced in the sp stage... the neurodegeneration is steady continous decline, while the inflamation part is episodical from lesions. the relape & lesion part is what tysabri improves.

i have some new symptoms with my feet that have not come from a relapse, so i fear i am closer to the neurodegenerative part(more pronounced in sp) then when i started tysabri(30 infusions ago)

i liked reading your post because of that, no one likes to be experiencing a situation alone.

[Marios325]

Thanks for the info. Indeed Tys does not cause remyelination directly but indirectly by slowing down the relapse rate, thus allowing our body time to partialy heal itself. SP by definition means worsening of existing symptoms/dissability without relapses. Thus if new symptoms appear, we must be talking about a possible relapse thus RR?? This is the way I understand this ofcourse!!
All the best, Marios

[0485c10]

Thanks for the info. Indeed Tys does not cause remyelination directly but indirectly by slowing down the relapse rate, thus allowing our body time to partialy heal itself. SP by definition means worsening of existing symptoms/dissability without relapses. Thus if new symptoms appear, we must be talking about a possible relapse thus RR?? This is the way I understand this ofcourse!!
All the best, Marios

can be thought of that way, allowing the body to remylenate, ty indirectly causes remylenation, not that it does it but it does it directly.

but the new symptom without a new lesion to indicating i'm still rr?

Actually my feet have been affected differently before, but i didn't recognize this symptom. doc said it's just an old lesion acting up differently in a way i don't recognize then asked if i was on disability yet.

[0485c10]

SP by definition means worsening of existing symptoms/dissability without relapses.

interesting thought does this mean that the only disability aquired during sp has to have been started in rr? i'm not sure i ever read sp definition that way.

but i think the stages are
RR->worsening rr->sp with relapses still present -> sp with relapses no longer present.

so there is a time where it is both sp & relapsing for a while, but after the relapses stop there is no way to get any new affects of ms? only disability from existing symptoms? its a nice thought, i hope it is true. i can kind of start thinking about functions i have intact now & will remain intact. kind of makes sp something to look forward to. i don't know, its probably one of those things i will have to learn the answer by experience.

[0485c10]

From the mmss site it describes sp..

Secondary-Progressive MS (SPMS)

SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability.




it doesn't say if "progressive disability" can be with new symptoms acquired without relapse. it doesn't say if the persistently worsening functions could be a function that was working normal before sp then stopped being normal without a relapse happening?

i wonder if this means that a new symptom automatically place a person in rr or at most "sp with relapses still present"?

the # of symptoms a person has before going sp, might be the difference between a "mild sp" & and a "more aggressive sp"? Unfortunately, more questions about ms without answers.

[Marios325]

It's confusing I know!!! That's why Docs base their SP assesment on a mixture of many factors. For example one more factor is that people with RRMS tend to have a score of 4 or less, by the EDSS. People with SPMS usually have a score of 6 or higher, meaning that some form of assistance is needed to walk. People that have relapses and based on EDSS are between 4 - 5.5, usually go on to develop SP........
So many info!!! The above is from About.com

[0485c10]

. People that have relapses and based on EDSS are between 4 - 5.5, usually go on to develop SP........

good piece of info, thanks for posting it Marios---it seems like the object of this game is to try to figure out how the doc's think. this piece of info helps with that. thanks for posting..... be well, stay strong & rr for as long as possible, cheers!