Tysabiri, MRI scan not shown does he need this

Everyday living
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Hello Everyone ,

Been sometime since being on here, had (still do) child issues to sort out, (recent news on sky about toileting issues, has no one heard of idopathic chronic constipation/encorpresis, obviously not to sky or the offending people who live in a world of there own until they get some chronic illness) sorry rant over. My better half, gerry is now having tysabiri and his infusion starts next week.

All the severe stress we have been under apart from two relapses back in Jan last year he has coped so it was with some caution and doubt that on the last visit to the consultant i questioned as to why gerry should be having this tysarbiri as it was recommended for him to have this so they first arranged a MRI scan and blood test. He has not been bed bound, no optic neuritis, no incontinence yet when speaking with the ms nurse (after his scan results) she spoke as if she was reading text book words to me. ‘His MRI scan showed significant changes for him to qualify having this treatment and therefore he fits the criteria.’ Anyone else had this happen to them.

Gerry is fine about having this treatment so fair enough its his body. He is Jc positive already by the way. So of course this is why i have/having concerns about him taking this risk. One in 11,000 i think the odds are on contracting PML . Anyone else had this treatment and what can Gerry expect. I said if it was me i would want to look at my before scan and after scan and make sure i do need this treatment. I just come across Fampyra which they get in N Ireland. why can’t we get it here and where in this website can we find out about treatment in certain areas. (love to move now). We missed out on going to manchester MS Live. Gerrys ms has taken a back seat recently but he is still coping and walks with a stick.

I thought you had to be really bad or at least have 3 or more bed bound relapses to have this type of treatment. According to consultant it sounded like the copaxone was not working and so they recommended this. What can Gerry expect, we just don’t want any nasty suprises so we just want to be aware, love to be positive about all things but we live in the real world, we acknowledge the glass is half full aswell as half empty. Its about the only thing is well balanced between us. lol.love sandy

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Hi I was only diagnosed in November. My first relapse my right side stopped working, I have recovered my left side is also affected but not so bad. Then eye muscles stopped working in November. AnywY I’ve had little things just started my first dmd. I don’t walk with a stick but can’t walk far. Anyway my neuro said I can go on tysabri if I want to change. My MRI showed new leisons but they weren’t active So I’m guessing they can see a change and want to try and stop it before things deteriorate, if u are on fb then there a good tysabri closed group they will be able to help more I would guess Em x

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Exactly. I started on Tysabri three years ago because I had had it with MS’s nasty surprises and wanted a bit of plain sailing for a change. It has given me that - no major relapses since.

To be offered Tysabri, your MS needs to be very active and aggressive, that’s all. You don’t need to be at death’s door. Either your MS needs to be demonstrably not well-controlled by the first-line DMDs (as in my case and, as it sounds like, in Gerry’s), or just so lively that the neurologist thinks it is best skipping that stage altogether and getting straight on Tysabri.

Bear in mind that signs of disease activity on MRI are not always well-correlated with actual disability. A person can have lots of new lesions and just happen to have got lucky about exactly where they are, so they don’t cause much obvious trouble. But the next one might, and the more active the disease, the more risk of bad trouble around the corner. That’s what you’re trying to stop.

Tysabri is strong stuff, and there are risks, as you know, but it is an awfully good drug. I am very grateful that the option was available when my MS turned nasty and started taking lumps out of me. I’ll never get back the function that I’ve lost for good. But without Tysabri, I feel sure that I would be in much worse shape by now.

Alison

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I am on Tysabri and wish I had been offered it much earlier. I have seen quite a few people who have it and some of them are not showing any disability at all. I really believe that I would be in a better state if I had started it years ago and would swap places with Gerry in a minute.