I was diagnosed with MS 6 years ago after having optic neuritis and had no other relaspses for years until a few months ago. I’ve now had 4 relapses in 8 months so the neurology dept want to put me on treatment straight away to stop further attacks and damage. My MRI scan also shows a considerable amount of change and new lesions. The options I’ve been given are Tysabri or Lemtrada. I was given a week or so to think about which one I wanted to go for and then had an appointment with the main neurologist a few days ago. I was swaying towards the Tysabri prior to the appointment a few days ago as the common side affects aren’t as bad (on paper) as the common side affects of Lemtrada. However the serious side afffects of Tysabri are worse than the Lemtrada. However at my appointment a few days ago the main Neurologist has now told me I’ve tested positive for the JC virus so Tysabri is a risk. So I thought ok then, that’s made up my mind so I’ll go with Lemtrada…but then he told me Lemtrada is only really affective if started within the 1st 3 years…and I’m 6 years in. So he suggested maybe going on the Tysabri for 2 years and then coming off it as the risk of PML gets considerably higher and switching to the tablets.
I’m a very active person and need to stay active.
So my questions are:
Has anyone that’s positive for JC virus been on Tysabri??
Has anyone experience of swapping from Tysabri to Gilenya tablets??
Has anyone whos had MS over the 3 years gone onto Lemtrada after this time?? If so, has it worked??
Thanks in advance
Hi Aimee33,
There are a number of posters on Shift:MS who moved to lemtrada a number of years after diagnosis (and after having taken all manner of earlier DMTs including tysabri and techfidera I think). Might be worth re-posting over there /taken a look at some of the lemtrada threads (there are a few…)
K
Hi Katy,
Sorry I only just registered on here…What do you mean ‘shift’? Where do I look?
Thanks
Hi
I’m on Tysabri, on my 8th infusion.
I am JC positive and been told I have a 1 in 700 chance of PML. I have blood tests every 3 months and MRI every 6.
I didn’t like the potential side effects of lemtrada and if also if it doesn’t help then its difficult to move to another DMD. At least if Tysabri doesn’t work then I can try something else.
Last year I had 5 relapses, since I’ve been on Tysabri I’ve had 1. I guess therefore it is helping.
I wish you all the best with your decision x
Hello, Shift: MS is another forum. It is one of the more sensible ones (like this) and has a number of regular posters who are pro- aggressive treatment having failed on other options and who are very happy to share their experience. Xxx
Hi Aimee
Its so hard making these decisions.
I was on Tysbari (and was jc+ the whole time) for about 2.5 - 3 years. Then they came out with a new blood test which not only told you if you had the JC but what your real chances of developing PML were. Mine were really high so i had to come off that and move to Gilenya. Gilenya was certainly not as effective for me, compared to no relapses on Tysabri I almost continuously relapsed on Gilenya. Latest MRI like yours shows lots of change and I have been offered Lemtrada and need to make my mind up by the end of this week really. No-one has told me about the 3 years thing - I have been diagnosed around 7 years now…I will have to ask about that. I like the idea of Lemtrada (forgetting side effects) that its a one off, well a 2 time thing and then all being well - youre done. But I also did really really well on Tysabri.
Good luck Aimee - I hope everything works out well for you
x
Hi Aimee
I remember when the Phase III trials on Lemtrada first came out, it was pretty clear that people who had recently been diagnosed with MS saw much more benefit from the drug than those who had had the disease for longer. But most neurologists will prescribe it to anyone. I don’t know whether this is because they think it helps people further on in the disease or because they don’t want to tell people that it is unlikely to help them.
I was on Tysabri for just over 4 years. It didn’t seem to do much for me. My walking deteriorated a lot while I was on it. My bladder function improved a lot - but it only started to improve once I started to take Simvastatin so I don’t know whether one, both or neither of the drugs helped with this. I became positive for the JC virus after three years on Tysabri. After another year, my risk of getting PML changed from low to high.
I have now gone onto Cladribine, a little known but very effective drug at slowing down the inflammatory part of MS. This seemed to me to be a better bet than Lemtrada. You can read about it here:
http://multiple-sclerosis-research.blogspot.com/2016/01/suppose-there-was-therapy-for-all.html
I choose Lemtrada as I wanted a treatment which was aggressive and short term. The 10 year data is favourable.
I like the fact that once its done it done. Its short term pain for long term gain. I don’t need to worry about taking ongoing medication or taking it on holiday. I could have children if I wanted without the increased worry of relapsing from coming of the meds. I have not got the PML worry or the worry of rebound associated when coming off Tysabri.
I’ve finished my second round today and I’m hoping that kicks MS down for a long time to come. My last MRI showed no new lesions, importantly, no brain loss which is associated with cognitive decline and above all I have no disability.
1 Like
My neuro told me that it Lemtrada stops MS and on another MS site folks are saying, if suitable, it should be offered as 1st line of treatment.