Does anyone else have this? Does anyone know of any research going on.
I still relapse about 3 times per year at least one is really bad. I feel rather disheartened and frustrated.
Hi Steph, as far as I am aware Tysabri can only stop up to 85% of relapses. If you are really lucky you may not have any but think most people still have a degree of relapses. On saying that my daughter started Tysabri in Nov and has not had a relapse since even though she was having one a month since diagnosis in June. Sometimes Tysabri does not work and you may need to speak to your neuro or MS nurse to see if it is working for you, have you had an MRI since starting on it? An MRI is the only sure way I think to see if it working, it will show if there are any new lesions or if it is old ones causing problems. Lx
Hi Steph, sorry to hear you`re still relapsing.
I hope things improve.
polllx
Hi Steph,
Sorry to here you are still relapsing so much. There is a group on FB for people taking Tysabri that may be able to answer your question better - UK Tysabri users - UK Tysabri users (Natalizumab) | Facebook . Good luck
Forest x
Thank you for your replies. I’ve requested to join the FB group. Yes I’ve had MRI scans several of them and they show no new lesions which is why I’m curious about relapses with no new lesions. I’ve found a few people with this as an issue just wondered if there were more.
The MRI scans for every relapse (as is recommended for those on Tysabri to check for PML) is a new thing so where previously it has been assumed that there is a new lesion for every relapse not there is data to suggest otherwise I wondered if anyone knew of any research for it.
Don’t get me wrong I don’t want lesions but I would like to know why I relapse without any!
Thank you for your replies. I’ve requested to join the FB group. Yes I’ve had MRI scans several of them and they show no new lesions which is why I’m curious about relapses with no new lesions. I’ve found a few people with this as an issue just wondered if there were more.
The MRI scans for every relapse (as is recommended for those on Tysabri to check for PML) is a new thing so where previously it has been assumed that there is a new lesion for every relapse not there is data to suggest otherwise I wondered if anyone knew of any research for it.
Don’t get me wrong I don’t want lesions but I would like to know why I relapse without any!
Hi Steph, I am on 2 facebook groups. One for Tysabri, even though it is my daughter taking it and not me and they are a great bunch, very knowledgeable and friendly bunch, there is usually someone on there who has answers or can direct you in the right direction, the other group is one for carers of people with MS, another great group who are very supportive. I like you always thought that if you had a relapse there would be a matching lesion. An update on my daughter, in November she was pretty much housebound, could not walk more than a few feet and needed to hold onto walls or me as very unstable. I was having to help her shower and she spent most of the day in bed. She started Tysabri in November, just had her 4th infusion on Friday and this Monday she started training as a nursery nurse, 4 days into training and it’s going great. She is tired but a good tired, she is tired with doing stuff rather than tired out by life. She has been to lunch with some of the girls and out shopping with them. She gets the bus there and back again by herself, this was something I really did not think would ever happen again as she was so ill just a few short months ago. Like someone else said, Tysabri reduces relapses (best case scenario), it does not stop them completely. I hope you get to the bottom of what is happening with you. Maybe see you on the facebook page. Lx