Natalizumab (Tysabri) People's Experience?

Hi Everyone

I hope you’re having a lovely weekend wherever you are! :heartpulse:

I was wondering what people’s experience of Natalizumab is? My Neuro is wanting me to make an informed decision on a few different DMD options I could take, but they and the Multidisciplinary Board feel that Natalizumab is the best option.

Hey,

Welcome to the forum, probably not the best subject matter you’d want to be discussed haha.

I started on Tysabri in July and so far it’s worked a treat for me. Beforehand it felt I was relapsing every 3 or 4 weeks and now barely feel any of my symptoms.

Side effect wise, I have noticed it starts to get a bit harder to tolerate after the third infusion with a bit of a headache but nothing too bad otherwise all good.

Hopefully this is a bit of a help? Wish you the best in making the decision, important thing is to have the confidence in the medication once you’ve chosen.

Hi, I have been on Tysbri for 11 and a half years. I have been relapse free just a few small things that might of just me getting old rather than MS problems!

So far all I have always had it by infusion every 28 days which is not an issue just a regular coffee morning with friends but will soon be changing to subcutaneous injection so much quicker and without the hassle of being cannulated. We are monitored carefully, tested for JC every few months and have annual MRIs which in my case have shown no new lesions since I started. In the year before I started I had several relapses and 22 lesions appeared.

I would advise anyone who gets the chance to get on Tysabri as soon as they can.

Hi

Thank you for sharing your experiences!

If you don’t mind my asking, how’s the actual infusion process? Does it feel weird during, like, can you feel the fluid going in? And are you able to comfortably read a book during, for example?

Obviously the Neuro will probably address those questions, but it’s cool to hear from first hand experience.

Enjoy the rest of your weekend, and thank you again :smiley:


reds0cks

Once they have the cannula in they will flush it with water which is usually cold and you can feel that but I don’t feel the drug going in. When I first started I was really surprised how little I felt once they had started the drip.

The only thing that stops me from reading whilst I am there is that we chat too much whilst drinking coffees and munching on biscuits. The worst part for me is them taking the cannula out at the end.

I have been on Tysabri for 10+ years during which time I have had no relapses and a wonderfully stable decade. It’s been a wonderdrug for me and it really can stop highly active RRMS in its tracks.

Hi, I’ve been on Tysabri since formal diagnosis in 2013. Since then I’ve NOT had any relapses so would heartily recommend it. You do have to commit to the regular four weekly infusions but that’s a small price to pay when it slows down the progression of the disease and keeps you in regular contact with the professionals. I hope it works as well for you.

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Hi. I recently had a bit of a relapse and my doctor is suggesting some treatment including Tysabri. I came on to see what was being said about it and these posts are encouraging in the sense that everyone is seeing the benefit with no real downside. I was a bit worried having read the possible side effects and the fact it’s a 4-weekly dose.
Another option discussed (I think) is eculizumab, which I can’t find much about. Does anyone know about that?
I’m due to see the doctor in a couple of weeks to discuss and decide what to do, so thought I’d do a bit of research first.
Any replies would be most welcome! Thanks.

Tysabri’s great. It’s one of the highly effective treatments and it really can stop aggressive MS in its tracks. I’ve been on it 10+ years and no relapses. Its drawback is the PML risk, of course, and you will have heard and read all about that, but if you test negative for the JC virus, that’s a great place to start.

Sorry, I don’t know anything about the alternative drug.

Hey, been on Tysabri since July last year, felt so much better since, feels like it’s been stopped in it’s tracks. Pml risk is something to consider but testing negative means it’s definitely a no brainer.

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Thanks for that. I’ve had the PML/JC test which came back negative. Looks like Tysabri may be the way to go. Although I’m not feeling too bad at the moment I guess there’s always the feeling it will develop.

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Thanks that’s encouraging to hear. Discussion with my consultant is coming up so we’ll agree next steps then. I feel better about the Tysabri option now thank you

That’s it: heading off worse trouble down the road is the name of the game.