Hi everyone so my post said is had jv result and it’s negative Neuro was considering tysabri or Gilenya Had MRI but I’d have my big relapse in November after the initial MRI and things had happened in between So I’m on extavia and she is wondering if it’s working and my ms has calmed down as it’s a year exactly since it’s started. My problem is it’s hard enough looking after 2 kids with the effects left from previous relapses. I’ve just got willow back and want it to stay that way I want to try and be the best mum I can, She said one more big relapse def tysabri But I don’t really want to have another big one. This ms stuff is all pretty new to me. I’ve slept all evening now awake at stupid o clock and as the kids are sleeping my brains working overtime. I have ms nurse in June. In my hEad I’m thinking should maybe try Gilenya as people have great results on it and save tysabri If more really big ones hit. I’m so confused. Ive decided I need a night out this weekend I haven’t had once so ce befor willow and I really need some social time without it involving head shoulder knees and toes x
I would go for Tysabri first if I was in your situation
As you said the most important thing is to avoid another relapse and Tysabri is more likely to achieve that result than Gilenya
When I was making this choice , I went straight to tysabri , my thoughts were… Why wait for another BIG relapse they may leave me with permanent damage, and wish I started sooner. And not sure if there is a set time between finishing Gilenya and starting tysabri. Good luck with your choice Gray x
I would bite their hands off if they’re offering you Tysabri. I’ve been told by an MS nurse at Addenbrookes that I wouldn’t qualify for it as I have no active lesions. If your neurologist is considering it, that would suggest to me your MS is active enough to warrant it. I wouldn’t wait - I would just go for it.
Good luck with whatever you decide x
That’s what I’m starting to think As looking after the kids is so exhausting And 2 big relapses in 6 months has left considerabl damage
Tysabri is the most effective treatment for MS. Seems to work particularly well for people who have it earlier in their disease (I haven’t read that anywhere, just observed). For some people, it seems even to reverse the damage they have. The downside is the danger of PML - even if you’re negative for the JC virus at the moment, you are quite likely to be positive sometime in the future. If you stop having Tysabri because you become JC +ve, you will face the danger of rebound relapses (although going on Gilenya can mitigate this). Like Raspberry Ripley, in your position, I would take their hand of if they offered me Tysabri. Best drug = best future (most likely).
Well I have ms nurse next month I’m also now wondering if I should go for it as she said I’d have a low threshold for putting you on it if you say though if you are positive it’s a different decision. Now testing negative I’m now thinking maybe I should just say I want it This ms is bloomin confusing
I was diagnosed with MS in 2003. I have used injection medications (Copaxone, Avenex) and with each I had numerous side effects that also had to be medicated. I was scared and it seemed like by symptoms were getting worse and worse. I have been on Tysabri now for about 5 years (started soon after it was approved). I have no side effects other that being a little tired for a few hours after the infusion. The infusion is very easy and done every 4 weeks. My MS symptoms have subsided to the extent that I asked my neurologist if I really have MS. He said yes, absolutely… but the medication is working. I have looked at the new drugs that have recently been offered, but I find to reason to change. Tysabri has given me my life back. I recommend it to you if your doctor/nurse are recommending it for you. Good luck, Janel
My relapses have been becoming more often each time but i had two in 6 days while on copaxone so they put it to a medical failure and im on tysabri. Its the daddy of all daddy drugs for ms. I was fatigued to my eye balls but since ive been on tysabri i can walk comfortably again and feel like a old me. Its great & no matter what i will not come ofd tysabri i tested negative to the jc but even if i suddenly became positive im not coming off it. I dont wake up feeling grogfy im now just like a normal person.
But there is a chance of pml which can leave you serverely brain damaged or death but everytime you go foe youre infusion youre monitored closely and they run some blood and dip test before giving you the infusion each time as youre more at risk of picking up infections so any cold/flue dont sit onnit go str8 to doctors. they found 3 new lesions on my mri and my neuro doctor strongly suggested tysabri i couldnt walk or move it went from right leg to left then moved up both arms and right side of face. 6 bags of steroids kicked it but they was considering plasma exchange and re think my drug options. I asked for tysabri and i can walk normally again. Do everything a normal person can do no fatigue i feel like a new me. I wish id of been on tysabri 8 years ago when i got dx but ah well im glad im on it now the sooner your on it the quicker it starts to do its magic. Id consider it if i was you
Martin, you are right about the risk of PML, but if you have your blood tested every 6 months for the JC Virus and it comes up negative, you are good to go. Tysabri has done so much for me. I decided years ago that quality of life was more important to me than the risk. I have no desire to be house bound or in a wheel chair relying on my family to do everything for me. This drug maintains my independence long after it was anticipated that I would be incapacitated. I’d certainly consider the drug if I were newly dx’d, but I don’t know if patients can get straight on it. When I started, you had to have failed on one or more of the injectable drugs first. I’m from the US, I don’t know how they work it in the UK. Best wishes, Janel
I’m currently not on a DMD after coming off hateful Gilenya seven weeks ago. Before that, I was on Rebif for nine years. I am really feeling it. It’s like MS “in the raw” with nothing holding it back. I finally have an appoinment at Addenbrookes next month and I am going to be pushing hard for Lemtrada and I will wait for that drug as I know that can be life changing - it’s the closest thing to a cure right now. I know someone who did the trial and, after relapsing every three months, she hasn’t had a relapse since her first blast of it in December 2009. I just want my life back.
Tysabri is great for me im thankful i got offered it to be honest i feel great i wake up every morning and want to get up not stay in bed. what ever you choose good luck
I’ve already been told by an MS nurse at Addenbrookes that I wouldn’t qualify for Tysabri as I have no active lesions so that’s not an option for me.