Franks Tysabri exp., little sideeffects, no improvement

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby Frank » Thu Jul 24, 2008 4:35 pm

Hi Superman,

freut mich immer hier noch andere deutsch sprechenden Leute zu treffen :).
I dont really have relapses, but I feel that I got somehow worse over compared to last years summer.
Its hard to say what really happend. Due to my ankle surgery I couldnt word out much and it took about 6 month to get the foot pain-free.
After that I never felt that strong as befor.

I do believe that to some extend its due to a lack of training.
I was pretty active befor surgery over and could increase my abilities over time, so it might get better.

The two weeks befor the 9th infusion I spent in bed with fever and a really bad cold - so over the past month it was hard for me to get in a good shape.

I hope for better times to come...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Thu Oct 09, 2008 5:29 pm

I got my 11th Tysabri today.
Usually during the autumn and winter month I felt worse, compared to my favourable state in spring and summer. I was always worried whether this decline might be due to a relapse and sometimes got steroid therefor.

This year the exacerbation did not happen. Whether its because of Tysabri or something else is hard to say, but I like it anyway :).

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Tue Dec 16, 2008 7:13 am

I had my 13th (8th since my restart) Tysabri infusion today.
Still I'm feeling pretty well especially when taking in regard that its winter season, that makes me usually feel worse.

My neuro mentioned that the regulatory committee for germay plans to order a therapy break of MAYBE 3 to 6 month for Tysabri patients after continuous treatment of MAYBE 14 month or so.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby bromley » Tue Dec 16, 2008 12:39 pm

Frank,

A bit more about possible treatment holidays while on Tysabri.

http://c.moreover.com/click/here.pl?j17 ... 1&w=464753
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Postby superman » Tue Dec 16, 2008 3:48 pm

Personally here in France, my neuro who i saw yesterday didn't speak about any break.
I'll get my 18th infusion and Tysabri is really meeting its goal: no relapse since April 2007!
As well my walking although maybe not as long as i'd like(4 km ,3 miles ie without hobbling is much less than what i use to run a few years ago)
But compared to 2 years ago that's much better(a bit less than a km);
I am therefore not thinking about Tysabri break, all the more when considering that ,for the last days before my infusion, i'm feeling a slight worsening in symptoms.
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Postby Loobie » Wed Dec 17, 2008 5:50 am

I've been having some similar reactions after my first two infusions. Like Frank, my MS seems to be the "creeping kind" that isn't identified by strong, easy to identify relapses. And, also the same, the winters have absolutely been killing me. This year, not so much. Tysabri? Maybe, but I'm not complaining! I also have not worked out for quite some time after being in very good shape and I KNOW I feel the difference there. It's been so long that I have to really ease back into it. It's always been all or nothing for me with exercise, and I actually think I needed a sustained break so that I don't feel like I have to start back up with a full hour long intense workout. I just need to go very slow as the big thing I notice now is that I have such crappy flexibility and range of motion. And I also feel like I have very little "core" strength so I need to really concentrate on abs and back.

So far so good for me and Tysabri. I really feel like it might be holding the progression at bay; for now anyway. Here's hoping it keeps up. It's not like you feel the drug actively. It's just that after a little bit of time, I've been noticing that I feel very much the same from one day to the next with the occasional bad day thrown in for good measure. So now I feel like it's more up to me to make myself feel a bit better by getting stronger. I hope that's what I need anyway!!
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Postby belge » Tue Dec 23, 2008 9:57 am

hi everyone!
I had my 5th infusion of Tys and so far I must say there is no real inprovement but no relapse as well so I guess it's not too bad after all.. It also depends on the day - some days are fine and some just lousy as far as my walking is concerned. I just wanted to ask when did you feel some progress (after which infusion approximately)? I know it's different for each person but just to get some insight.. Anyway I hope I can one day really walk again (I think superman once mentioned that he can do 4km and cycle so this gives me hope! 4 km for me is totally inimaginable right now, I'm happy if I can manage 1km!! which I usually can't really, I have to stop for a while before going on)
have a nice holiday season and let's hope that we will manage through winter just fine!
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Postby superman » Tue Dec 23, 2008 1:47 pm

Bonjour Belge,
At the beginning i was feeling quite impatient like you.
I know as well that i am quite lucky amongst Msers
Personally i began feeling little improvements step by step:
after 2nd infusion i could stay standing up(not walking, just painting my flat) for a quite long time without feeling tired
Then at about my 3rd infusion i was going up and down in the stairs, without having to hold the ramps.
In addition i did test my cycling ability by doing some small rides up to the point my legs were feeling weak so i had to make a break, and then come back by train since ,for my ride, i was never too far from a train station(in Paris close countryside).
This helped me to get back some strength and endurance, up to my last September ride(3 days=92+90+50 km not flat)

My advise in any case would be to do some exercise, depending on what you can do today.
if you can walk just 100 m IE; try a bit longer, day after day.
swimming as well is really good(in my case after 15 min crawling i was feeling tired, now i don't feel any limit)since it has an anti inflammatory effect: just read advice about physical advice on MSIF.org and you'll read what i mean.
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Postby Frank » Fri Jan 23, 2009 4:09 pm

I had my 14th (9th since my restart) Tysabri infusion on tuesday.
Still everything is going fine.

I also had a routine MRI, the last one was done in 04/2008. No new lesions are detectable. Unfortunately the cutting planes of the MRI images differd a bit from the previous MRIs. There were some minor changes (to the better and worse) in the intesity or size of lesios visible, but its difficult to interprete them due to the discrapancy in the planes.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Lyon » Fri Jan 23, 2009 4:52 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:11 pm, edited 1 time in total.
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Postby HarryZ » Sat Jan 24, 2009 8:30 am

Lyon wrote:Thanks for keeping us up to date.

It's a shame that you can't derive the info you want from comparing the MRI's but on another front, at this point timewise maybe it's almost certain that you otherwise would have experienced increase of symptoms??
Bob


Bob,

Lesions and symptoms don't really correlate in MS. I think it's more the location of a lesion as opposed to "how many" one may see on a MRI that will result in symptom change.

And these lesions come and go which makes it all the more difficult to figure out just what is going on in the brain of a MS patient.

Take care.

Harry
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Postby yeb4432 » Tue Jan 27, 2009 7:35 pm

More than lesions coming and going I think it is more of a function of imaging technique and savy of the technician performing and aligning new images to old ones. So, much of what "changes" actually does not as it just appears as such on interval exams.

I disagree to an extent that lesions and symptoms don't correlate. For example, You have a big lesion in your CMJ that can absolutely corelate with just about anything downstream within the spinal cord.

I definately agree that subtle differences in similar apearinf lesions can produce a dramatically different intensity of symptoms.

I hope all is well.
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Postby Lyon » Tue Jan 27, 2009 8:02 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:08 pm, edited 1 time in total.
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Postby yeb4432 » Thu Jan 29, 2009 7:43 pm

yes well put!the creator gave us with far more than we need in terms of brain space, but lieel in terms of reserve through the spinal cord....
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Postby Lyon » Thu Jan 29, 2009 7:54 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:09 pm, edited 1 time in total.
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