Forum

Confused and worried

Recently diagnosed with RRMS and positive for JC virus I have to decide between being put on Tysabri and run the risk of PML disabilities or go onto Lemtrada with its host of side effects. Not a great choice and I’m very confused.

Sorry to hear about your diagnosis.

This chart may help

It’s not a great place I agree but MS comes with an array of serious side effects. Take your time and do your research.

I chose Lemtrada but its a personal choice.

Thank you for your response. I guess it’s difficult in the early days to make decisions, all I see is the side effects rather than the goods effects. Being JC positive I think Lemtrada is the way to go.

I have been on Tysabri for nearly 2 years now. I was initially JCV negative but after about a year one of my regular blood tests (boy are they fond of taking blood samples when you are on Tysabri!!!) showed that I was JCV positive.

I was pretty devastated because I thought that it was very much a black and white situation. However, my neuro (MS specialist) very carefully went through the results and explained that the most crucial thing when calculating the risk was the virus loading and the length of time that you had been on the drug.

With a low/moderate loading (like me) the risk, if you have been on the drug for less than 2 years is essentially as low as if you were JCV negative.

After 2 years the risk does increase but at my loading the risk is still - in my view - acceptable against the benefits. (Remember that the risk also increases after 2 years if you are negative)

The risk does increase the longer you are on the drug and everyone will have a view as to when that risk becomes unacceptable.

Tysabri has been good for me in terms of fewer/less serious relapses but I have to admit that it has not been the wonder drug that others seem to report. (There is a very strong likelihood that my diagnosis will change to SPMS in the foreseeable future).

Unlike some people on this forum I do not beat the drum for my particular medication. It is very much a personal decision based on your personal circumstances. I obviously have no personal experience of Lemtrada but from my reading of the effects and possible side-effects would, I think, make me very reluctant to try it but my personal views are worth absolutely nothing to anybody but me!

Have you got a MS nurse? I would recommend that you speak to him/her for a more reasoned and educated view.

Good luck with whatever you choose.

Thank you Boblatina that is very useful information. Yes I have a nurse and already have a meeting with her this coming week when I need to decide on the course of treatment. My JC result was relatively low and I could still take Tysabri but it’s a tough decision. Hopefully my nurse will help make things clearer later this week.

I have been on Tysabri for years and am a great fan of the drug. However, I would have been much harder to persuade to start Tysabri if there had been a good alternative available at the time (there wasn’t) or if I was known to be JC+ (there was no reliable test back then).

Things have moved on, and hurrah for that.

There are no risk-free options, alas. In particular, there is no drug-free way of opting out of the risks of uncontrolled, alarmingly active RRMS. Thank heavens for effective DMDs. Whatever you choose, I hope that it does a great job for you.

What does your neurologist recommend?

Alison

Hi Alison, my neurologist has left me to do my own research and to decide for myself. I was going for tysabri until my JC came back positive but the lemtrada side effects look pretty scary. I have to make the decision this week and its a tough one. I was only diagnosed in August after 5 relapses in 2015 so it’s happening very quickly.

I must say, I do get a bit cross with neurologists who seem to wash their hands of difficult and complicated decisions like this. Sometimes I do think that they use the (laudable) idea of patient choice to slide out of giving the clear advice that we can reasonably expect of them, what with their being paid eye-watering amounts of money to dispense the professional wisdom that they have acquired over more than a decade’s training at public expense… And then they hand-over the leg-work to you who (if you are like me) had barely heard of MS until a few months ago!

Right, sorry, that is a hobby-horse I can rarely resist climbing on when I read a post like yours. And yes, of course it is your decision, but I do think it would be reasonable to ask the neurologist which one, all things considered, he/she would recommend to you (and why) if you were his/her sibling. That is often a useful question to ask - flushes the blighter out a bit.

This is not a ‘beef or chicken?’ choice. It is complex and deserving of considered professional judgement. I do not think it is fair to leave you without a clear steer. In your shoes, I would be looking for clearer guidance than you seem to have had so far.

Alison

1 Like

Hey Pops,

Sorry to hear you’re in the crazy limbo pre-treatment, post-diagnosis stage and having to make a seemingly impossible choice.

I’m in the same position as you…pretty much exactly. I got my diagnosis only last week having not even considered MS as any possibility of affecting me at all until the last couple of months; it wasn’t even near, let alone on my radar. I’ve had two relapses within less than 3 months. lesions all over the darn place, and the pressure is being put on for a decision due to the very active form I seem to have. My choice is Tysabri or Lemtrada, just like you. At the moment I am thinking Lemtrada is my preferred choice but that’s totally personal to me and mainly stems around lifestyle as I know I would rather blitz this thing for an intensive period each year and then try as best I can to forget about it - apart from the obvious ridiculous (but reassuring!) levels of blood/urine/general other bodily fluids monitoring.

The article humbug posted has helped me a lot. The main thing is that you need to be happy with your choice and be confident that you are making it based on all the possible information you can get. Alison’s advice seems spot-on to me…ask and ask and ask for more information so you can make asn informed a decision as possible.

I still have a lot of questions. My main one is if one starts on Tysabri and then needs (for whatever reason) to change to Lemtrada, how long does that take? I’ve read about the wash-out periods and then extra time to make absolutely sure there is no evidence of JCV exposure before you can move to Lemtrada. So there could have to be as much as a 6 month break. I have been told there could be a wait for me to get on to Lemtrada due to having to be referred outside my NHS Trust area for that treatment (maybe a couple of months or more) but it would be a risk to wait that long to start treatment (I could start Tysabri in a couple of weeks time). I know I want to be on Lemtrada in the longer-term so do I risk a couple of months of no treatment now, or do I risk a longer gap between treatments if/when I swap?

I feel your confusion Pops. It’s a huge amount to take in. I have found writing my thoughts and research down very helpful in trying to make sense of a senseless disease. I wish you well…do let us know what you decide and how you get on.

SC x

I think you have hit the nail on the head with those questions and I hope that you get some sensible answers from your medical advisors. The trouble is, imponderables like future funding/drug availability are jokers in the pack and very hard to pin down. As if there were not enough medical/pharmaceutical uncertainties already!

I do think you are right to be very interested in the rebound risks with Tysabri.

Alison

Thanks guys for all your advice and comments. I’m in the middle of another relapse which equates to about half a dozen of them this year so my decision is not only important it’s becoming essential. Somehow I have to slow down this poxy disease for my wife and kids sake if for no other reason. I’ll let you know how the week goes and the decisions made. Thank you.

1 Like

Tysabri chosen. Start within a month.

Well done on making your decision. I genuinely empathise with how difficult it is to get to that point. I wish you all the very best with it.