Hi everyone, my dmd dont seem to be helping as much now. My Nuro has suggested NATALIZUMAB, im looking for people who are on this drug and would like to know the pros and cons. Can anyone advise me please …Karen
Hi Karen - just a quick reply as I need to go now - if you go to the Everyday Living index page and do a search on ‘Tysabri’ (the brand name for Natalizumab, you will find lot of recent discussion about people’s views on the pros and cons. I suggest you have a read to give your the background and a wide range of opinions. I’m in the ‘pro’ camp, being on it myself.
The brand name for natalizumab is Tysabri. I have been on this for 2 years now as I was on both Betaferon and Rebif respectively, neither of them worked as they should, they reduced the severity but not the rate of relapse, due to the MS being highly active. Before starting Tysabri I was relapsing on average three times a year since then I have had none.
I have just completed a part time Access to Health Studies course hopefully with a view to do a part time Occupational Therapy degree course at my local university. None of this would have been possible if I hadn’t been on Tysabri! The MS has completely stabilised, but it hasn’t helped as well as I had hoped it would on my residual symptoms.
The only real side to worry about is a very very rare brain infection called by PML, caused by the JC virus. The risk of developing PML with a JCV positive test is 1 in 350, or 0.3%! For me, the risks of PML are far outweighed by their benefits. I have even told my MS neuro and MS Infusion Nurses not to even bother wasting NHS time and money getting the test done s I am not even remotely interested. WHy would I come off something that. if I was JCV+, that has done me so much good for such an infinitesimal risk? The mind boggles! I, for one, will certainly not becoming off the treatment until they tell that they think I have progressed to SPMS.
I’ve been on Natalizumb or better know as Tysabri since August 2008 and me like Andy think its the best thing out there.
Before I started Tysabri I was having a relapse every 4 or 5 weeks I had a very aggressive from rrms and everytime I had a relapse it took another bit of my mobilty with it it got me really down and just felt live wasn’t worth living,
I was more than happy to try anything I herd about Tysabri I asked my neuro and he gave my all this story about PML but I didn’t care when In a wheelchair with only the use of my left hand no control over my bowels or bladder could barely talk swollow or breath and night mare fatigue what had I to lose I had to be be washed dressed and shaved I could do nothing for myself.
I started Tysabri and even after my first infusion I could click my fingers on my right hand and slowly after 3 infusions I could walk a short distance with a crutch then after 7 infusions I could walk a short distance unaided.
Now I can goto the gym a few times a week everything has came back accept I have to use a catheter but thats nothing If I’m walking around shops or out for the day I use a crutch.
I haven’t had a relapse in all that time for the first time since I was diagnosed I have a life that I enjoyed I’m far from 100% but I’m happy not in my wildest dreams could I imagine I’d be the way I am today.
Yes it has the risk of PML but that never enters my mind they can do tests now to see if you carry the JCV virus but I’m like Andy when you can feel the benefits we’ve had with Tysabri why would you give yourself the worry of knowing you carry that virus I’ll be taking Tysabri aslong as its giving to me even the risk was 1 in 10 I still would.
I got a magazine from the makes of Tysabri and there’s a 2 page story on all the risks of PML and even you test postive for the JCV the risks are 1.2 in a 1000 and 8.3 in a 1000 after 2 years.
Its very interesting reading if your interested and pm me your email address I’ll email you back a copy of the story.
thanks that would be great Mark but I dont know how to PM ive tried but wont let me send