Hello all…Im waiting to start Tysabri.Gotta do a 6week washout,im on week 4 now.Was on Fingolimod which i thought was great but neuro said its not working so have to change.Looking forward to tysabri not looking forward to stopping it.My spasticity has gone mental the last 3weeks,could this be due to stopping fingolimod and will tysabri help stop it a bit as baclofen not working last 3weeks.Going mad i am… Jimmy
I take baclofen along with tysabri I’ve been able to reduce the dose of baclofen since I started tysabri but not been able to cut it out.
I started my 8th year on tysabri in August Tysabri has been amazing for me Its helped with everything.
Hi markolad,iv 2weeks left before i start tysabri and im looking forward to it.I hear its great.8years on it,lucky you.I tested jc positive so i will only get 2years on it im told.It must be good if you can reduce your baclofen. Thanks markolad
Jimmy I’m jc positive and high risk but that doesn’t bother me Tysabri has given me my life back I’ve never had a relapse since I’ve started Tysabri I used to have them every 5 or 6 weeks, 3 months after starting Tysabri I was strong enough to get out of my wheelchair and learn to walk again.
Markolad,Im glad to hear you are getting great results from it and i hope i do too.Its really working great for you and i see why you dont want to stop it,jc positive or not.My neuro said it will be my decision to stay on it after 2years but my risk for pml will be high risk so it will be a tough choice but if i stay relapse free and my progression slows i think il try stay on it if they let me.Thanks for giving me hope in starting tysabri,looking foward to it. Jimmy
Jimmy for the first 4 years all my mris showed improvements and ever since they’ve been stable.
With my being jc positive I get an Mri every 6 months.
Some advice I could give you is have patience and give Tysabri time it take about 6 or 7 infusion before your fully topped up with it.
Markolad,thats such great feedback of what to expect.It is a great drug from what ive seen,i know 1guy that is getting a bit of improvement after 4months and another guy is near perfect after 5years.Will i have to get an mri every year now? I hate mri’s but i put up with them.You get them every 6months now and you are stable.Lucky guy,id love that.Great to hear a positive story markolad.Thanks for the advice… jimmy
You’ll get one every year even if your jc positive for the first 2 years there’s a very low risk but after 2 years they like to give you an mri every 6 months if your jc positive there’s a closed Facebook group of us and there are a lot more jc positive people then jc negative on there some when there jc positive and classed as high risk they get mris every 3 months.
Hi,I’ve been on Tysabri fo two and a half years and had to go for an urgent MRI scan yesterday because my JCV levels were elevated so the risk of PML is greater.I was asked whether I wanted to continue taking Tysabri, the drug company are happy for me to continue so long as I am closely monitored and have an MRI every four months instead of six and as I’m SPMS and on the second part of a trial for Tysabri and SPMS and there’s nothing else for Progressive MS I’m going to continue on the trial.I must say I do feel better on Tysabri although I don’t get the impressive results some get on the drug and I’ve had three relapse since I’ve been on it but as I said there’s nothing else.See ya Dave.
I will get an mri every year for the first 2years so will i.Is it just brain mri or the spine also.I will be fine for 2years but after that they will be watching me more closely.il put up with it if i get good results like you markolad. Thanks
Bigdave,you do feel better on it which is a good thing.The drug company are happy for you to stay on it and are closely monitoring you which is a good thing.Mri every 4months is a good thing to keep it in check.Its supposed to be good for spms and there is ocrelizmab which is in the last phase of testing for progressive ms and has great results so far and should be out soon id say.Just have to wait and see.Thanks for the info dave jimmy
Markolad- your story is so inspiring. Reading it this morning gave me a real kick to start the day. The fact that you came out of a wheelchair & are walking gives us all hope
ive been on tysabri for a year & ive improved. But im hoping for more improvement. I guess we have to be patient & try not to think about it too much. Just allow the medication to work
The best advice I could give you or anyone is to have patience and don’t think about it. I had to learn to walk again Its something most people take for granted and it was hard.
I was just amazed when I could click my fingers again I only had the use of my left arm I did get really disappointed when I woke the next morning and couldn’t do it but I learned the way it worked for me I could do something after an infusion then it left again but it was like my body telling me this is what’s to come keep going and after another infusion or 2 it came back and stayed being able to button my trousers or a shirt was a great feeling then tying my shoes to me those little things where like winning the lotto you can guess how good it felt being able to walk again.
My benefits seemed to come in waves a couple months of improvements then it stayed stable for a few more.
I really feel for those who stop Tysabri after 2 years cause after 2 years things really did improve then after 3 better again and after 4 even better and my ms has been stable ever since. The only thing that hasn’t improved is my bladder I still have to self catheterize but I sleep right through the night now without having to get up a few times to pee, but my bowels work now and the fatigue has gone. I only ever dreamt I’d be as well as I am today so you could say I’m living the dream
I still use my wheelchair if I’m somewhere I need to walk a bit and I sometimes use a walking stick but if I stay the way I am I’ll be so happy and thankful
Markolad you are an inspiration and well done to you.Being positive is also helping you.I lost the use of my fingers on lefthand 2years ago and trained my brain to get it back,i thank my playstation for it.Was in a wheelchair myself for a bit but got myself back walkin too.I hope i will be like you markolad in livin the dream and stay on it for as long as i can like you.You do make tysabri sound good and i myself am looking forward to it.It really has changed your life and hope i will be the same as you.Thanks markolad for giving me something to look forward to and i will be pushing to stay on it for a long time. jimmy
Just been told the drug trial I’m on for Tysabri and SPMS has been cancelled by the drug company,Biogen, as it was not reaching the desired results.It makes me so angry because it was working for me and I think they’ve done it for financial reasons in other words they weren’t going to make enough money.So now that leaves me with no hope of the slowing down of my steady decline into disability.Ah well I’m going to open a bottle of Southern Comfort to drown my sorrows.