grahamjk 02/02/15
Last reply 3 years ago
TYSABRI any use??

My consultant and MS nurse want to put me on TYSABRI and I was wondering if anyone has been on it and if it works. As I was only diagnosed with RRMS last april and having had two relapses they don’t want to put me on the entry level meds so I was wondering if its any good.
thanks all

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3 years ago

@grahamjk , I’ve not had it personally, but we have a few members that have been, or are on it.

You can search for previous discussions by using the forum search function (magnifying glass, top left). The search would give the following results:-

3 years ago

thanks @stumbler I will have a look

3 years ago

Tysabri is a good drug. I was on it for approximately 6-7 years. I would be happy to answer any questions you might have.

I am a nurse in the states.

I think Tysabri is probably the second most effective drug available for MS. There is one that is stronger which was approved in the UK in 2014 called Lemtrada. I took that one last year and my MS is improving.

Both drugs have risks. I can point you to some research & comparison of the 2 if you are interested. Your friend has found sound medical advice 🙂

Take care

3 years ago

Thanks @us-emma I’m just really concerned about the side effect as this is the first time I’ve ever had to take medication in my whole life (I guess I’ve been lucky till now). But what you said has started to reassure me a little so thanks again. XX

3 years ago

Emma would you post the comparisons please 🙂

I had my consultation with my neurologist yesterday and Tysabri as come into the discussion – but not for the reasons’s you’d think though 🙁

3 years ago

I took Tysabri for 1.5 years. I agree that it is probably the second most effective treatment today. It was the most effective treatment when both Emma and I took it. We don’t know each other, but both wanted to attack our MS as aggressively as possible. Tysabri was a great innovation that required only one IV a month. I was one of the few that had trouble tolerating the drug. But it was very effective in stopping the progression of my MS. My neuro wanted me to stay on it as my MRIs were favorable; however, the side effects were intolerable for me. I am also sensitive to Solumedrol. Tysabri has strong anti-inflammatory effects which caused similar side effects on me. I stress that those results were rare. I was lucky to be able to move into the active wing of a tecfidera clinical trial. The clinical trial protocol required that I spend 3 months “washing” out of Tysabri. That was before they recognized that there was a risk of a relapse coming off Tysabri that can result in “Tysabri withdrawal syndrome”. I had one heck of a relapse and only mention it to ensure that something similar does not happen to you. The biggest concern that I and most people have about Tysabri is the extremely low but real risk of contracting a rare brain infection called PML. All drugs seem to come with some risks, but PML is fatal or causes permanent severe disability. When shopping for drugs for MS,one has to keep one’s perspective because you have a disease that can cause permanent severe disability if left unchecked. We are fortunate now to have several effective drugs. I have been on Gilenya since it’s introduction in ’10 which can be very effective for some people, but comes with it’s own set of unwanted side effects. It’s one pill a day dosing is very convenient, but it’s side effects forced me to every other day dosing. My MS has been clinically worsening although my MRIs look unchanged. My neuro did not order spinal MRIs, so I suspect that is where most of my damage is occurring. I have been trying for almost 3 years to find a way to get Lemtrada, as I have kept up with the MS drug pipeline and knew that it was a great candidate for me because of it’s impressive efficacy and unique dosing. It requires IVs for 5 days and another 3 days 12 months later. Most people required no further dosing for at least 5 years. We don’t know if future doses will be required beyond that. Tysabri works well, but carries its PML risk and required monthly IVs for life. The risk of PML goes up after long term use of Tysabri and it poses significantly higher risk if you are tested and found to be JCV positive.

I begin Lemtrada this month after our FDA finally approved it’s use here in the US Nov ’14. I feel strongly about it’s use because of it’s clinical trial results and for me acceptable side effect risks. There is a 25% risk of trading my growing very serious MS disability risks for easily treated thyroid disorder risks. There are additionally very small risks of developing a blood clotting disorder called ITP. It is a serious condition that along with the thyroid risks require monthly blood tests for 5 years, but in no way compares in my mind to Tysabri’s risk of PML which if nothing else limits how long you can feel safe using Tysabri. I have not only chosen Lemtrada because of its proven ability to halt the progression of MS, but it is the only treatment that was proven to reverse many MS symptoms. I have a close friend (who happens to be a Registered Nurse) that made it into the Lemtrada clinical trial that was wheelchair bound and suffered with many of the other MS disabilities. She improved enough to walk 4 miles a day by year 3 and many of her other disabilities either improved or resolved. She knew other participants that had similar results. There are testimonials on the web including this site that support its efficacy. The choice is obvious for me. It may be different for you. Frankly, I cannot imagine how.

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