Tysabri/Gilenya

[lee P]

Hi Tony

 

Are you having it at the Gwent ? If so see you there

[shepp]

Hi Tony

 

Are you having it at the Gwent ? If so see you there

no mate down at the heath.

[lee P]

Oh well, it's very straightforward Tony and its worth having. I'm on my 7th infusion that day. Its helped me a lot since I started, in that I've doubled my walking distance, trebled it if im having a good day and its halted any progression of my symptoms apart from when i had a cold and a mild uti when they played up a bit. It hasnt worked as well for me as it has for some others judging by comments ive read on the web but its certainly helped. I'm glad I took the plunge and hopefully things will only get better and I hope it works out for you.

 

All the best

Lee

[shepp]

Oh well, it's very straightforward Tony and its worth having. I'm on my 7th infusion that day. Its helped me a lot since I started, in that I've doubled my walking distance, trebled it if im having a good day and its halted any progression of my symptoms apart from when i had a cold and a mild uti when they played up a bit. It hasnt worked as well for me as it has for some others judging by comments ive read on the web but its certainly helped. I'm glad I took the plunge and hopefully things will only get better and I hope it works out for you.

 

All the best

Lee

That's good to hear, if you take too much notice of how it seems to work for some people you'd think it was a miracle cure i'm not expecting too much from it but as I said in my last post just to slow down the progression and keep the relapses under control and let me get on with my life, anyway i'm looking forward to it, I've heard that drinking water during the infusion helps with head aches and such like do you drink water and if so did it help. I'll keep up the posts and see how things go Tony

Edited 3 Apr 2013, 11:23 am by shepp

[lee P]

Yeah drink plenty of water because if anything it makes it easier for the nurse to find a vein.she can use. I was lucky, i didnt have any side effects from it apart from feeling fatigued for a couple of days after the first couple of infusions. Good luck.

[PTN]

Hi Tony,

 

I'll be having my 12th infusion this month. What i've learnt over the last year is Tysabri will, for the most part, keep your relapses at bay. It is still possible to relapse but it's rare and not as disabling if or when it happens. I find I still have fatigue but this is limited to a few days a month. I have responded best to the treatment out of my group but thats because the time between being diagnosed and starting Tysabri was very short. I am assuming that the MS issues I had were able to be repaired now that I am no longer relapsing whereas patients who have had MS for much longer and were on alternative DMD's before where not seeing such "miraculous" results but were living without relapses or progression. They are all very pleased they moved to Tysabri.

 

As for hydration, I don't personally drink while i'm being infused. In my group the nurses give us 100ml saline after to help with hydration and to make sure all the Tysabri is cleared from the line. I find that's enough for me but any extra fluid can't be a bad thing (which is why I always treat myself to a pint at the pub after :-)

 

Had my first MRI last week since being diagnosed so am keen to see the difference in the scans 12 months on. The fact that I now walk unaided and can even jog if I want to speaks for itself but I still want to see whats happened up there. Good luck with your treatment and keep us posted on how you get on. Paul.

Edited 4 Apr 2013, 10:19 am by PTN

[Christina]

I agree with Paul, that in my Tysabri group it seems those who've had MS for less time seem to have more 'miraculous' results than those of us who've had it much longer. I also think it's down to how much neurological damage has been done, so I just hope to stay where I am and not to keep relapsing. However, even any small improvement is a bonus, and after 4 infusions I think I'm starting to see some benefits. The first few days for me post infusion are tough as far as fatigue and headache are concerned, so I find drinking more water helpful.

 

Chris x

[lee P]

Hi all, Just thought i'd post to say that things seem to have improved a lot with me since I last posted on this thread. My walking ability and balance issues seem to have stayed pretty much the same as before but my energy levels have taken off big time over the last 6 weeks !

I get some days where I feel fatigued for no reason but generally I feel much better than pre Tysabri.

On a facebook Tysabri group I joined the general consensus seems to be that it takes 7 or 8 infusions till noticeable improvements are felt, so hopefully considering this energy spell has lasted so long i'm now at that stage. (i've had 8 infusions).

Hopefully it'll be the same for all my other fellow Tysabrians on here. Keep the faith people