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Tysabri??

Hi everyone hope your all well! I have recently seen my neurologist after a gap of 2 years without any appointment and she has decided upon assessing me that there has been a significant step with disability :(. She thinks I’ve had around 3 relapses over the past year and wants to change my DMD from techfadira to tysabri. She sent me for an MRI and the results show that there are no new lesions and previous ones are stable so I’m now wondering if this decision is correct and if I really need to change? I saw MS nurse on Monday who went over all technical stuff to do with tysabri however I’m still confused as to whether this is the right decision? Is tysabri any good? Has anyone experienced any bad side effects? And does anyone think this is the right decision? I’ve had my bloods taken to check for JC virus of which I’m waiting the results but feel like it’s all moving very quickly and I want to be sure it’s the right choice! Any advice and help would be great! Thanks in advance Laura

Hi Laura

First the bad news - sadly there’s no way anyone can know if it’s the right choice . We’re all different, we don’t know how things will progress, or how we’ll react to any particular medication.

But now the good news - tysabri is one of the best DMDs we can have. It’s more effective than tecfidera at reducing relapses (and 3 relapses in a year suggests tecfidera isn’t doing that great a job). I was on it for about 6 years, and other than feeling tired after an infusion, I had no side effects. And importantly, I had hardly any relapses in that time. But of course, the big worry is PML. My level of the JC virus was getting high, putting me at a greater risk, so I decided to come off it. Others I knew were in a similar boat, but decided to carry on as it was so effective for them.

And just because you’re stable now is no guarantee of the future. In that regard, a good DMD is a bit like getting home insurance - you may never get burgled, but it’s good to have the insurance there just in case. But as I say to everyone contemplating DMDs, you can always try it and switch if you don’t get on with it for whatever reason. I initially thought I’d go on it for 2 years, then take a break. I ended going for over 6 before stopping. But if you’re not comfortable going on it, ask your MS nurse of neuro what other options there are. I’m sorry I can’t give a definite answer either way!

Dan

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Hi Dan, Firstly thank you so much for your response it has definetly given me some positive things to think about! I have tried to research as much as possible and like u have said it seems the only negative is really the risk of PML and I have been assured that this is always checked for thoroughly whist taking tysabri! I agree that it doesn’t sound like techfadira was doing it’s job for me and so I do feel your right about the whole insurance scenario! I really appreciate your personal thoughts and insights and think it has helped me realise that this is a good choice! Again thank you Dan! Laura

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Hi Laura,

As Dan said, I don’t think we can say if it is the right choice for you as everyone is different.

However, I am currently on Tysabri and it is the best decision I have ever made. Before I was on the treatment, I had 4 relapses in that year and there were multiple lesions found on the scan. I was diagnosed at this point and my consultant offered either this or Lemtrada; so I haven’t tried anything else.

It’s been about 2 years since I went on Tysabri I have not had a single relapse. The last scan I had, last year, was absolutely stable and actually showed that the lesions I did have regressed!

I’ve not experienced any side effects from the drug itself and I am currently JC- so I don’t really worry about PML either.

So yes, it is definitely a great drug and the main side affect most people worry about is PML. This is not much of an issue if you’re JC- and you’ll be tested every 6 months.

I think speak to your nurse again and let her know of your worries but as Dan said, a good DMT is like insurance. Even though your scans are stable now this could change instantly in the future.

Good luck and hopefully whatever you choose is the right one for you :slight_smile:

Nora x

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Hi Laura

I just had T58 this past week and I can honestly say that it’s saved me a good portion of my life !! I got very sick, very fast with a rather nasty lesion situated in a tricky position on my brain stem. It took a while to slow the progression down but I’ve now had two six monthly MRI’s that show stability. Over the moon doesn’t cover it !!

I get very tired and quite nauseous for a couple of days afterwards, a bit like a hangover but chocolate and sipping tea have it covered and frankly, for me, it’s a small price to pay.

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Thank you all for your responses I really appreciate your insight and I feel it has helped alot with my decision! I think I’m now definetly going to go for it!! It’s hard to be sure what’s best but after hearing your personal experiences I think it’s a good choice for me! Thanks again everyone! Take care Laura

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I have been on Tyabri for some years after my first-line DMD stopped working and my very active RRMS had started taking lumps out of me. I wish I had made the switch a year or two earlier: it might have spared me some nasty relapses that left permanent damage. Never mind: Tysabri has been a wonder drug for me, and I have not relapsed since I’ve been on it.

There was little or no JC virus testing back then, and I probably wouldn’t have cared anyway: I was in so much trouble I would have risked it. However, understanding of PML risk has improved dramatically since then. That’s good, but a risk is no less of a risk for being better understood, unfortunately. If you test JC-, then hurrah for that. But if you do test JC+, and the neurologist still wants you to start on Tysabri, I would suggest that you question her carefully about the risks involved so that you understand the implications.

Alison

The Barts Guide is a good source of reliable information.

http://www.clinicspeak.com/understanding-pml-risk-on-tysabri/

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Good afternoon Laura_om, I’d hate to steal your thunder but I had an email from my MS nurse this morning and she said I have one lesion in my MRI scan I had last week. I’m currently on Rebif and am thinking on trying Tysabri. I have zero disability but don’t want to risk not taking it. I’m very worried about side affects as I work full time and usually put a lot of extra time in. I don’t want to make myself sick with side effects and take time off work. I love my job!

Good afternoon mem! I think you have definetly jumped on the right post with your query! As you can see there are so many people who want to share there personal experiences to help people in our position understand things better! As previously mentioned by Dan DMD’s are abit like insurance and I definetly agree with this statement as it makes so much sense and in your case although you have no disability at present this will hopefully (from what I’m getting in response to my query) ensure you also don’t go on to have any in the near future! I completely understand how you feel and you have every right to have concerns but from what I can tell this DMD is supposed to be very good and doesn’t have many side effects (but then we are all different) hopefully you get some more answers to help you with your decision! I know this post and the people’s responses have definetly helped me with mine of which I’m extremely greatful! All the best! Laura

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This is super-informative, whammel - thank you. Just what a person weighing up the pros and cons needs.

Alison

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