Last reply 3 years ago
Hi everyone – I'm new!

Hello, I have recently discovered this site and am finding it very helpful.
I have had RRMS for about 17yrs and am currently taking Tysabri. I’m having a dilemma as I’m now at the 24th month mark and my risk profile is high because I’m JV positive with high titre and previous MRIs show a large number of lesions. My neurologist is happy for me to continue with more frequent monitoring (MRIs every 4mths). My dilemma is that for me the risk of PML (about 1 in 100) is very high and yet on the Tysabri I feel very well, have had no relapses over 2 years and my fatigue is much less. My other options are Lemtrada or Tecifedera. I have two children (aged 7 and 5), I’m currently a stay at home mum and I’m finding it virtually impossible to come to a decision where there are so many unknowns… Has anyone else faced a similar situation? Best wishes, Becca

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stumbler
3 years ago

Hi @beccah and welcome.

Your predicament has been faced by a few members. Possibly, @jasfromtas can give you a good insight into this.


Anonymous
3 years ago

I have taken both tysabri and tecfidera. I have taken Gilenya for the last 4 years which have been very bad. I can tell you that you are taking the most effective DMT before lemtrada and it is great that you have been doing so well! I understand totally what your dilemma is as I am waiting for my neurologist to receive certification required here in the states to receive lemtrada. Don’t think that your risk of pml is the only problem. I learned the hard way that switching from Tysabri to a weaker DMT can cause a relapse, in my case a really serious one. I am excited yet anxious about starting lemtrada after many months of research and seeking out and communicating with actual patients who are also medical professionals and investigating physicians of the clinical trials. The feedback has been excellent and they are unfamiliar with anyone with a negative experience. But my situation is far different than what you have described. I did not tolerate tysabri well and only was able to take it for 1.5 years. The pml risk you reported is higher than any other I have ever heard about. I would not be able to accept that high of a risk for pml. I would question that and maybe get another opinion from another MS specialist if I was not ready to switch. My MS has been extremely active since quitting tysabri. Since I have taken the 2 oral drugs you mentioned while my condition has steadily worsened should be a red flag to others. They are probably better choices before tysabri rather than after. Lemtrada required only 8 treatments in 12 months that protected 80% of trial participants for at least 5 years (the length of the trial). The 20% required at least a third dose. The risks are real just as these other mentioned DMTs have real risks. I have several credible reports of disease activity not only being halted, but problems resolving themselves in the months following lemtrada. There are even testimonials on this blog which I am not including. You should proactively seek them out. That is a huge advantage to me since I have developed quite a bit of painful neuropathy that I hope will halt or improve after lemtrada. The idea of not requiring continuing treatments is very appealing to me. Maybe one day MS will cease to be the center of my universe! I think the fact that you are doing so well would definitely lead me to revisit the real pml risk before making the decision to switch. If it really is as high as you reported would compel me to switch to lemtrada asap and definitely not to one of the weaker oral DMTs. But that is based only on my research and very poor experience. We are all very lucky to have these choices which are all relatively new.


us-emma
3 years ago

Welcome @beccah!

I was on Tysabri for about 7 years, knowing I was at risk for PML the whole time. It worked well for me but Jan 2014 my risk grew to more than 1:50 so my doc refused to Rx it.

I was scared. I had been diagnosed 10+ years at the time & was losing a lot of function to MS. I thought nothing else out there (including Tec) was as strong.

Lemtrada had been denied by the FDA Dec 2013 so I was out of good options. I read all the research (I am a masters level nurse) and decided Lemtrada was still my best option.

I literally searched the globe to find a doctor in Germany who I was comfortable with, flew there and got Lem April 2014.

Now my disease has improved to the point that I don’t feel as if I have MS at all. I had read about symptom reversal but didn’t put too much stick in it- I was “too far gone” or along in my disease.

Thankfully I started a blog for my family prior to the trip and as I kept it up was shocked to start seeing major improvements in my disease by summer.

Now I don’t even consider myself to be affected in any way by MS. It has simply been amazing to me.

If you want to read the blog it is at Lemtrada.blogspot.com or I am happy to answer any questions here or in private message.

Best wishes in your decision.

Take care,
Emma


beccah
3 years ago

Thank you so much Stumbler, Emma and Mbrsinc for your comments and ideas. Emma – your blog looks great. I’m going to look at it properly tomorrow! I’m starting to feel more positive as before I could only see the horrible statistic of PML and now I will definitely get a second opinion on the risk and look at Lemtrada in far more detail. Enjoy the rest of the weekend! Becca


jasfromtas
3 years ago

Hi @beccah!
Lovely to meet you (even in the circumstances).
I have faced a similar predicament in that I have also had a high risk of PML (1/80) and chose to come of Tysabri and move to Gilenya. Like @mbrsinc I can not say it has worked all that well (for me, current EDSS sitting about 6), and I have had two major (in hospital for more then three weeks each time) relapses in the last year whilst on it. Rather inconvenient and disruptive to work, living, having a normal 29 year-old life..
I am currently awaiting for a neurology review for Lemtrada, which will be listed on the PBS in Australia from Wednesday. My (and my neurologist) is not to keen ‘step down’ in drug efficacy (I have only had MS 2 and a half years), so I am not considering Tec. I do understand that there are a multitude of factors needing to be considered including drug side effects (of which Lemtrada’s is not subtle!) but then it is all about weighing things up.
@us-emma I am keen to know more about how you feel that you do not now have MS at all, and that you had considered yourself “too far gone”. My neurologists have been hesitant to assure me of getting Lemtrada despite my deterioration on Gilenya because I have not had very inflammatory disease, or would be classified as being in a ‘good responder’ group (I also have Masters RN level and researched till my eyes fell out). That is, I have had MS 2.5 years, had 7 ‘relapses’ but only have one (not contrast enhancing) lesion in my spine, and nothing else. Nothing in my brain. And no new lesions. Their consensus is that I do not sit firmly in the RRMS camp as I have deteriorated between relapses and they are not keen for the risks of Lemtrada, given that it does not influence ‘progressive’ disease. That said I am 29 and have been using gait aids for over a year, currently a 4 wheelie frame. So I am not keen for the “risks of MS”… May I ask, what were you like (mobility wise, MRI wise, relapse wise) prior to and after Lemtrada? (feel free to refuse, but I would love to pick your brain – not literally!)
🙂 Jas


jasfromtas
3 years ago

Hi @us-emma,
Just found your other posts – seems to answer some of my questions…!
Fatigue seems to be a larger factor with you then with me – I have been told this may be because of the lack of brain involvement I have (there has to be a blessing in spinal disease somewhere…) but you were not using mobility aids? I completely understand the feeling of not being 100% on your feet (truly debilitating, and invisible) – this is one thing that using crutches / frame does help with – it takes the invisible part out of the MS and you actually get some acceptance from people.
Thank you for sharing your story,
Jas


Anonymous
3 years ago

@jasfromtas I am not medically trained as you are but surely if you have had relapses (significant ones too) then you have inflammatory disease going on? If I remember rightly you have reached EDSS 6 quickly and would seem to have quite agressive MS. In your shoes I would give Lemtrada a go. Actually I would pushing for it as much as possible. With Ty ruled out you are nearly out of options and at 29 you have everything to live for!


Anonymous
3 years ago

I agree with @sandwich! I did not understand @jasfromtas‘s post. The conclusion is desperately wrong. My best friend was wheelchair bound and by the third year post lemtrada was walking 4 miles per day. Sounds like Jas is the perfect candidate for Lemtrada before more damage occurs. The criteria is for relapsing forms of MS. Jas is so young (since DX) to risk further injury by treating lemtrada like it has unacceptably high risks is irresponsible. There are serious potential SEs for sure, but all effective DMTs come with risks. IMO the potential rewards far out weigh the risks. I suggest putting some glasses on to spare your eyes and revisit the research. But don’t take too long! Your MS sounds particularly active which really indicates that inflammation has been a big component of your case. Perhaps your current DMT gets the inflammation under control by the time of you MRI with contrast. Clinically, Jas had relapses even if it was not confirmed by MRI. I personally was initially not diagnosed by MRI because they did not use the right equipment. I changed doctors and states with a state of the art MRI facility and the inflammation was obvious even to my untrained eyes. 🙂 Once again, the criteria for Lemtrada is clinically OR mri detected relapsing MS. I hope you get better fast Jas! Best wishes!


Anonymous
3 years ago

@jasfromtas, I totally agree with your observation how people are unaware of your disabilities when not using walking aids. I walk unassisted for short distances, but am incredibly weak with poor balance. It can lead to some precarious situations as others do not detect my status and are perplexed if I need help with a door or avoiding a collision in a crowd, or shifting terrains. I use a scooter for situations that I know will have greater demands and it is all others need to recognize I am disabled.

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