Franks Tysabri exp., little sideeffects, no improvement

Frank · Posted: Thu Jul 24, 2008 5:35 pm Post subject:

Hi Superman,

freut mich immer hier noch andere deutsch sprechenden Leute zu treffen Smile

.
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
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Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation

Frank · Posted: Thu Oct 09, 2008 6:29 pm Post subject:

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 Smile

.

--Frank
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Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation

Frank · Posted: Tue Dec 16, 2008 8:13 am Post subject:

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
_________________
Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation

bromley · Family Elder Joined: Sep 11, 2004 Posts: 1847

Frank,

A bit more about possible treatment holidays while on Tysabri.

http://c.moreover.com/click/here.pl?j1735007371&w=464753

superman · Family Member Joined: Jan 23, 2007 Posts: 53

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.

Loobie · Posted: Wed Dec 17, 2008 6:50 am Post subject:

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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"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

belge · Getting to Know You... Joined: Apr 24, 2008 Posts: 19

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!

superman · Family Member Joined: Jan 23, 2007 Posts: 53

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.