Hi all
I have only had 4 infusions so far. 2 weeks after the first one I have been suffering extreme fatigue worse than
I have ever experienced with my ms.also just before my 4th infusion which was last wed I have suffered a really bad relapse.
My neurologist said it sounds like my body is rejecting it and I may have to stop having them.
Has any one else experienced these problems with tysabri? I feel dreadful today, shakey and so wiped out I can hardly function.
Tysabri rejection is when your immune system makes Tysabri antibodies, this don’t make you feel tired.
On my 1/2 waty through my 5th bag I was unable to breath my blood oxygen level drops and so did blod pressure, if they don’t stop the infusion yI would have blacked out and gone into a coma, fortunately for me MS infusion nurse was near by and stopped infusion and gave me a oxygen mask and kept shouting breath breath which for a min or so was impossible.
Anyway point is a simple blood test your neuro can do to see if you have or slowly developing Tysabri antibodies, its a bit silly saying your rejecting Tysabri and not even bothering to do the blood test first.
Some people do feel tired with and others have headaches after infusion and MS does change and gives people fatigue anyway.
Tysabri is made of Humanized antibodies and are antibodies from non-human species whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans
I would insist they give you the antibody Natalizumab blood test, if you are then you can move to Gilenya their is no animal cells in that as its a pill.
I was meaning bit silly for Neuro not you lol
Hi Hobs
Thanks for your reply. Think i meant to say reaction not rejectionBrain like mush today.
Neuro said its quite unusual to have permanent fatigue with tysabri.
Wow your rejection sounded really scary! Take it your on Gilenya now? How effective is it with relapses etc?
Thanks
Becky
Ah ok I did think it was odd thing for him to say, When I did go for infusions some people warned me I might get fatigue and said it would go but I had that anyway at the time.
After them 2 mins I took my first breath which stung, each breath was easier and colour came back to my face. They gave me I think a anti histermine to swallow, I then had to wait 40 mins then final blood pressure check and they said I could go home.
I had the antibody blood test which was positve and then had to wait 2 months and have another one and I was still positive so
I cant have Tysabri ever again.
Been on Gilenya for 2 months now and for me its brilliant, fatigue totally gone so has tingling on the brain which I had for years and my thinking is quicker more alert etc.
3 others who live near me though and took Gilenya at the same time both got Fatigue and one of them vertigo as well so much so he came off it.
Gilenya if I remember is one down from Tysabri on cutting relapse rates there is a Gilenya facebook group and like me have aid Gilenya does more than just cut down relapse rates its like it rolls back the MS a bit or allows the body to work better.
There is also BG12 now (pill) and Campath is also back on the menu for us.
Hope you get sorted either way
ThankyouWill research Gilenya.
Good to know I’ve got other options.
Seeing MS nurse in a couple of weeks and will go from there