Possible Tysabri. Will steroid treatment affect MRI results? Advice appreciated.

Hi, I was diagnosed with RRMS last February and I am now in my third relapse in 5 months despite Rebif treatment since May last year. I have seen my Neuro today who has said that I need IV steroid treatment next week. He also said that as the Rebif is clearly not stopping my relapses I need to go on a more aggressive treatment. He said that I should bypass copaxone and that I should start treatment with Tysabri or possible fingolomid. I have an EDSS of 6.5 now and will do anything to stop the relapses and the damage. I am having another MRI with contrast and am hoping that someone could tell me whether my MRI results will be affected if I have the steroid treatment beforehand? I understand that you have to show that you have active (enhanced) lesions in order to qualify for Tysabri. Also, has anyone actually improved their EDSS after starting Tysabri or does it just hopefully stop further damage? I am also worried about having 3 lots of IV steroid treatment in one year. My neuro recommends that I do but should I be worried? Sorry for all the questions. I feel a bit shell-shocked today. A x

Yes, steroids could affect the MRI results.

If you know who is arranging the scan & steroids (your MS nurse perhaps?), then you should call them and make sure that they get things organised the right way round.

It is also important to get your MRI done asap. Lesions do not enhance for all that long (probably as long as symptoms are getting worse - once they are getting better, active inflammation is dying down).

It’s a tricky bit of logistics, so call anyone and everyone you can think of to make it happen right! My MRI referral went astray a few years ago so it ended up being too late to show any enhancing lesions by the time they fitted me in again so I didn’t get Tysabri. By then, and because I had to have my steroids afterwards, my relapse had got really nasty and the steroids did squat - it was too late :frowning:

Re getting better on Tysabri - yes, some people report improvements; not everyone though.

Re 3 lots of steroids - it’s against the norm these days I think, but I guess it depends how bad the relapse is? All steroids can do is shorten a relapse - they won’t change the outcome. If you are not comfortable with having them and think you can make it though a long relapse, then maybe you should do without. But remember that they work best when taken early so changing your mind later may not work. Tricky :frowning:

Good luck.

Karen x

No wonder you are reeling a bit - what a time you are having.

I had the same concerns about MRIs and steroids and worried that I might fail the Tysabri exam, but it was OK. That was just my experience, though, and I can’t remember the timescales or even the sequence of events very clearly. These times tend to be a bit of blur in retrospect! I do remember that I was very anxious to get the scan done fast when there was something to show, and I am sure you are doing the same and for the same reasons.

From what I understand of it, Tysabri makes no claims about improving things in the here and now. But some people do find that they are doing better than they had been. I feel better in myself, no doubt about it, but I’m not sure I could claim to the kind of improvements in function that would show up clearly in an EDSS score. But then I had had MS for a decade before starting Tysabri, so there was a fair bit of long-standing stuff that was never likely to improve much.

It was clear to me that Tysabri was my best chance of staying as well as I could be, and I am very glad to be on it. It has been nearly 2 years now, and no relapses, which makes a very pleasant change - something you will have no difficulty relating to! I really hope that it does a good job for you and gives you some respite from the gruelling succession of relapses. It’s good stuff.

Alison

x

Thank you Karen and Alison for your replies. Karen, my MRI scan has been marked as urgent, however my Neuro said that he wanted to get me in for steroids next week. At the moment, I cannot walk more than a couple of steps even with my crutches and my neuro pain and spasticity are particularly bad also. I guess that is why he thinks steroids again will be a good idea. I haven’t heard from the hospital yet about the timing of either the steroids or the MRI scan. My MS nurse has been off sick since October and there is nobody else that can advise me. Thank goodness for the advice and support of people like you on this site. My neuro did not say anything about getting the scan done before the steroids but I will question this if need be. I would rather postpone the steroids and put up with the relapse symptoms for a while longer so that I can get a better result from the MRI scan. Thank you Alison for your kind words of support. I am glad that you are doing well on Tysabri. It is so good to talk to people who have been through the same experiences. A x

Amily

I was relapsing about every 4 or 5 weeks and that was even being on Avonex I had loads of steroids and MRI’s my MS was so aggressive they thought something else was going on I don’t know what my EDSS score was before I started Tysabri or what it is now but I was in a wheelchair and only just had the use of my upper left side my right side I had none the fatigue was a night mare and I’d lost control of my bladder and bowels my eyesight and speech was also affected.

I started Tysabri in August 2008 I wasn’t hoping for much if I could even get a few months without a relapse I’d have been happy the makers only ever said it my ease relapses.

But I’ve been relapse free since I started Tysabri in August 2008 I’ll be going on Monday for my 57th infusion, after 3 months I could walk again with crutches and after 7 I didn’t even need those just over 2 years the fatigue eased I had the full use of my right hand again I could write :slight_smile: my bowel is back to almost normal the only problem I have is I self catheterise and there’s just a little weakness in my right leg but I go to the gym twice or 3 times a week which gives me loads of energy and the fatigue is all in the past.

Mri’s before I started Tysabri my MRI’s where much worse then they are now :slight_smile:

Not everyone has results like that I’m one of the really lucky ones but some have and most will tell you they’d rather be on Tysabri then not.

Mark x