Hiya, I was diagnosed with highly active RRMS over the last four weeks after a hospital admission eight weeks ago where I had total numbness on the left side of my body, double vision, balance/proprioception issues, MS hug and trouble walking. The original symptoms took about three weeks to die down, but never completely resolved. Just before I had my first MS consult two weeks ago, developed new symptoms. And despite him saying he was confident I’d stay mobile I’ve already had to use a crutch at work because I’m walking like a 90yo. I’m due to start tysabri in about a weeks time but I am starting to worry about how many relapses I’ve had. My consultant says at least three in the last 5-6 months based on symptoms and lots of brain lesions.
Has anyone else had a very active onset but has gone into remission really successfully with tysabri?
I had exactly the same! Huge debilitating relapses and lots of lots of lesions between scans.
I started Tysabri in Dec 23 and had my first stable scan in Jan 25. I know that sounds like a long time but Tysabri is fast working compared to others so for highly active rrms it seems to be the best.
I’m really glad I went onto Tysabri and stuck with it for nearly two years.
Due to my jcv status and lifestyle I will be changing later this year to kesimpta but I wouldn’t change my start with tysabri.
Just don’t be disheartened if it takes a while to get a stable scan. I had 3 MRI’s before I finally had my stable scan
With my fingers firmly crossed I would give a tentative ‘yes’ - 15+ years of natalizumab and counting.
The difference for me is that I had been on a less effective, relatively low-efficacy DMD for 10 years before that, and acquired a good deal of permanent damage before starting natalizumab. You can’t get the toothpaste back in the tube once the damage is done. That was then, and the drugs available were the drugs available. But this is now and you have the chance to start before your very active MS takes too many permanent lumps out of you. Sooner you start the better, I’d say.
My MS was highly active from the start too, and I’ve never made a full recovery from any relapse. It’s really important to get on top of it early. I wish I had made the switch sooner, but there you go, and I am happy too hear that you have the opportunity to do that. Good luck with it.
I’m very sorry about your diagnosis, by the way.
Thanks for your reply, that is really reassuring. Although that does sound a long time between stable MRIs. Do you mind if I ask if you continued to have problematic symptoms/relapses during that time or did they ease up?
Thank you, I know I am lucky to be diagnosed at a time when these very effective treatments are available. I’m sorry that you had a rough start to your MS journey, although it’s good to hear your treatment is effective now.
I did have a big relapse in June 24 but thankfully since then been relapse and lesion free
I dread to think how things would have been if I’d have gone onto something slower working