jojo75 03/12/17
Last reply 6 months ago
Tysabri

Hi this is my first post. Excuse me if I waffle! I was diagnosed in 2012 with rrms. I’ve had 3 different dmds. In September I was signed off work for 6 weeks. With what I now think was a stress related relapse. My first real severe relapse. Any way saw my Neuro in October who wants to change me from gileyna to tysabri. I had the nightmare repeat mri in Friday. Just looking for people thoughts on tysabri . I am changing back to a job that’s less driving and a bit less pressured. TIA

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nutshell88
7 months ago

Hi
I met a prof in the US in 2010 he saod tysabri but i was walking fine and everything call me a coweredbut i refused to put my life at risk 0.1% if you get many relapses its your choice. I hope other members give you their feedsck about tysabri. Be safe x


californiadreamin
7 months ago

Were you tested for jcv? What did the test show? Years ago with active ms tysabri was one of the few choices available. Today if you are jcv negative it is a very effective drug that you should strongly consider. If you are positive you are probably better off with ocrevus, mavenclad or Lemtrada. You risk of pml is also higher because you have had likely other immunosuppression from the other dmts.


jojo75
7 months ago

Hi I was tested for jcv when they looked at tysabri about 3 years ago. Thank you @calaforniadreamin will chase up getting retested.


californiadreamin
7 months ago

Yes three years is far to long. You really can’t make a safe decision without those numbers. Do you know what the numbers were then? The test is known to have errors and the numbers are not likely to go down so if was ok then it might not be now, but not the other way around.


jojo75
7 months ago

Hi yes Will definitely push for retest. My ms nurse said wait for scan results. It’s all about NICE guidelines I guess and cost. Not that I’m knocking the NHS. Will email once I’m at work.


wjgregg
7 months ago

I have had three infusions of Tysabri thus far. I had two severe relapses earlier this year. The second put me in hospital for three weeks, then in a wheelchair (which I have now escaped, for the most part, thankfully). My M.R.I. scans showed that my multiple sclerosis was progressing rapidly, but was still classed as R.R.M.S. Faced with a 30 week waiting list to even see a consultant neurologist (who didn’t even specialise in multiple sclerosis), I bit the bullet and went to see a Multiple sclerosis specialist privately. It was the (second) best decision I ever made. He recommended Tysabri. I have not suffered any major side-effects, save for fatigue and joint pain, which I can live with. It’s all about getting a good consultant, who know’s what they are doing with multiple sclerosis, and putting your trust in them. I have not had a relapse, and am feeling as good as I can in the circumstances.

Good luck, and best wishes.


Anonymous
7 months ago

Hey @jojo75

I’m on Tysabri and have been since May 2016 and I’m JC positive. This is my first DMD, my last MRI was static and showed no new lesions which made my year!

I know there is a risk of PML, for me I have a 1 in 5000 chance. But to be honest it has finally halted my MS progressing. Before starting I was having constant relapses all small but then I had a serious one in Feb 2016 and it was at this point my Neuro recommended Tysabri.

I guess I’m not really too worried about developing PML, I’m more worried about them stopping Tysabri and putting me on something else. I’ve been lucky with a Tysabri in that I’ve not had any really bad side effects. All in all I guess it’s changed my life, I happy on this treatment risks and all. I guess to get good results for me I feel the risk is worth it.

Everyone feels different, you have to do what’s right for you. But I do highly recommend Tysabri for a personal point of view.

Avril xxx


londonlad
7 months ago

@jojo75

I have just had infusion number 8. I was diagnosed this year after a pretty abrupt onset to MS.

I took the decision to go with Tysabri because 1) i am JC- 2) i read about the success stories with Tysabri, and looked at studies.
There are other effective medications, but what also appealed for me, was that Tysabri has been around for a very long time, and there is a lot of evidence, and studies supporting its effectiveness.

At the monthly infusion i go to, i have now heard first hand from others, at how effective its been for them. i know numerous people who have been on it since trails began in the early 2000s, and are doing extremely well, in terms of stability. and you’ll hear from the other posters here, a lot of positive feedback.

Of course, there will be some who won’t do as well, but what i am told, is that it seems to be one of the most effective of all options.

as i started the Tysabri 3 months after my onset, and i was still recovering. Its hard to know what effect the Tysabri had on the recovery, but i have continued to improve, even still as its approaching 9 months.

I had a MRI recently, and it showed no current activity on the scan, and the 10 lesions i had, 1 of them the beauty that caused all my symptoms, are starting to shrink. So i feel super positive right now. so its doing what its suppose to do!

I also believe its impacted my cognition. I feel my thinking is clearer than years. But i did stop drinking too, so it could be that..

the one negative from a lifestyle perspective, is the frequency (its a price worth paying for now) i do think down the road, something less

However, for now, i give it a very positive review. best of luck


jojo75
7 months ago

Hi a huge thank you for all of the replies to my post. It has given me some of your experiences to ponder. I have emailed my nurse and will hopefully get some more info once results are in. Will post once I get the info. Thanks again. Jo. Xx


jojo75
6 months ago

Hi appointment with my ms nurse. My most recent scan dec 17 has shown a new lesion. Retested today for jcvmy previous test 2013 was negative. Going to go with tysabri. Gileyna not holding the beast at bay. Appointment booked for 2 weeks and hopefully get my start date
Thanks for everyone’s comments. So nice to be listened to and not judged. Jo xx


londonlad
6 months ago

@jojo75

Great news, and very happy to hear things moving forward.

As I commented, Tysabri has been effective for me to date and I am sure it will for you.

Best wishes


dmargarita
6 months ago

@jojo75 Hi, i was on tysabri for over 2 years (may 2014- agoust 2016 ). During the time i was on Tysabri i had no new lessions and no side effects. After 2 years my JCV numbers started to go up so i had to change to Lemtrada. You can contact me if you want to know more about my experience.

I hope tysabri will be as effective for you, as it was for me.


flyingkites
6 months ago

Hi. I had 6 relapses in 8 months – so my neuro put me on Tysabri and I haven’t had a relapse for all 21 infusions so far – over a year and a half.
No PML brain virus yet! But I don’t have the JCV in my blood (touch wood) so I’m not really at risk. But it’s still the part that scares me silly.
The downside is you get soooo sick of needles. For me, not really scared – just had enough!
I got very lethargic during first 10 or so infusions. Sometimes didn’t hit me till 2 hours after. Haven’t been lethargic for a few months now.
Good luck. 🙂

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