Tysabri being discussed after one episode

Hello all, new to the site and would really appreciate some advice. To give some background, I have always had an active job, which requires me to stay fit and train regularly and I work a 24 hour shift pattern. Around two months ago I had an eye exam at the end of which the optician told me my eyes were remarkably good considering my age (35). Two weeks later I noticed I could not recognise a person from a distance. Having only just had an eye exam I assumed this would correct itself and while in this pandemic, I did not want to trouble the medical profession. After two weeks, during which time my vision had very slowly deteriorated through the point that changing focus was taking longer, it settled on double vision when looking right and I was told that my right eye appeared to be spasming when looking right (nystagmus). The next day I attended A&E and the doctor there went through countless neurological function tests, all of which I was told were to try to rule out MS, none of which I had difficulty completing. My consultation ended with the doctor telling me I was going to be referred to the eye clinic, which should be over the next couple of days. I assume once again due to Covid-19, this ended up being a little over a week. Once there the consultant essentially confirmed what the optician had told me five weeks previously and I was referred to Acute Medical to consider MS. After a day of more neurological function tests I was taken for an MRI. A short time after that a new consultant appeared and informed me they were now assuming secondary cancer. A sleepless night later and I was back the next day to look for the primary, but a CT came up with nothing, which meant all the cancer support was cancelled. A neurologist then appeared very briefly, told me he did not think it was cancer, gave me a corticosteroid prescription and told me I would be high risk in the pandemic once I took the steroids. I have since received a telephone conversation from a different neurologist who told me that my lumbar puncture did show OCBs, which shows my immune system is up to something, but we all knew that from the big white patch on the MRI scan. He then went on to explain that nothing at this stage could be definitively MS, there is still a chance (however small) that this is a single event, and that he needed more bloods taken to rule out other similar autoimmune conditions. Then yesterday I was contacted by the first neurologist I spoke to who was very excited that he had been given the green light to consider Tysabri as a treatment, and asked me to rush in to have the JVC test. So I now have none of the symptoms I had when I left the hospital with the steroids (which by that time had become vertigo, nausea, feeling unbalanced and pretty serious visual impairment) have only had one MRI taken and this single episode, and yet when I look on the Tysabri manufacturers websites I do not appear to come close to the pre-requisites. Considering I have not had anything like a confirmed diagnosis, and other conditions are still being tested for, not to mention the outside chance that this could simply be unexplained, my opinion is that Tysabri would be the nuclear option which is disproportionate to the circumstances/condition?Any thoughts would be hugely appreciated.

My apologies this is such a lengthy post.

Hi Chris and welcome to the site. You have been through a lot and are understandably concerned. Bloody unlucky to be facing this at a time of lockdown. There is no one standardised way in which this can be approached. You seem to have fallen under the care of a neurologist who believes in the “hit it with both barrels” camp. Of course you are right to question any course of action but if it IS MS then Tysabi is a phenomenal drug. I am guessing more conversations about your scans and results have happened in the background and the team feel it’s a good idea to hit it hard. You don’t give your age but if you are younger, they tend to go harder. However I am not keen on the way it’s been sold to you. It seems a bit of a hard sell…You are ultimately the one who decides but you need to be given all the info. This is hard to do on the phone and they are obviously pleased that they have been able to offer it to you, but without being able to discuss this properly it is a big decision to expect you to make when you have been told conflicting information. It can’t hurt to have the JC virus test, so I would go ahead, but ask for more clarity as to why it might not be more beneficial to ramp up treatment more slowly. I was on plegridy but had another Leision. I am now being considered for either Tysabri or Ocrevus (my preferred choice) I am 44 with mild symptoms similar to yours, so I think it’s the right time for me.

Hi Dexter, thankyou ever so much for your reply. It was a long initial post, but I’m 35 years old. I went in for the JVC blood test, as you say, no harm in finding out. I have an appointment with the neurologist who is very excited about Tysabri this coming week, so I will find out where this plan has come from then. My issues are threefold, firstly they are still ruling out other conditions which begs the question why start a treatment for MS, secondly the Tysabri website itself gives a relatively strict criteria for those considering that treatment option and I do not fulfil either of them and lastly, even if it is MS, I do not know how they can have already decided that it’s time for such a powerful treatment after one incident. I feel I should also clarify that I currently have no symptoms and the course of steroids was over three days and finished over two weeks ago. I also find myself under the care of two neurologists, one who has already said there is a school of thought that says wait and see on the off chance it’s an isolated event, the other appears to want to start this treatment for which PML is obviously the worst outcome. No symptoms now to signing a form accepting the risk of PML would be one hell of a leap, regardless of the slim odds.

Hello Chris

Welcome to the forum, sorry you’ve had to find your way here.

I suspect that your neurologist is a) confident that it’s definitely MS, and b) that the large white blob on MRI shows demyelination. Having OCBs plus demyelination in addition to your symptoms, the fact that you responded so well to the steroids and presumably your neurological examination, could give the doctors sufficient evidence to diagnose MS. It seems they also think your MS is likely to be highly active, hence the decision to offer you Tysabri.

Tysabri does seem like taking an elephant gun to your system when you feel completely ‘normal’ and as though a less aggressive drug might be more appropriate in your situation. However, on the assumption that you are JC negative (this is the virus from which a very nasty side effect from Tysabri is possible), Tysabri is the closest thing to giving you a very slim chance of having more and indeed, disabling, relapses.

Dexter is quite right that you’ve been ‘told’ this is the drug you’ll be given rather than having a reasoned discussion with your neurologist and/or MS nurse. As you are the one taking the drug and thus whatever the ramifications, it’s your body, you should have input into the best drug for you.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid All the available disease modifying drugs are detailed together with their efficacy and possible side effects. I’m a big fan of Tysabri myself, and in your shoes, just like your neurologist, I’d be strongly in favour of it. But it must be your own decision as to what to take.

Dexter is also completely right that having the JCV antibody test is sensible. You’re not committed to anything by having the test, and in the meantime, keep researching Tysabri and the other potential drugs. You could have a look at https://shift.ms/ There are a lot of Tysabri users on that forum as well as users of the other category 2 DMDs. Equally, do a search on the Everyday Living part of this forum for Tysabri users experiences.

Ultimately, if you prefer to try a different drug initially (at least) or in fact not take a DMD at all, it’s your choice.

I wish you the best of luck.

Sue

Hi Sue, thank you very much for your response. The recurring theme appears to be that I need more information, which hopefully I will receive when I speak with the neurologist this coming week. Due to having no experience in such matters, I end up resorting to Dr Google entirely too often. I do not know for example how it’s activity level can be assessed off one image with a ‘halo’ of swelling and no image for comparison. I also cannot seem to find out whether Tysabri is a lifelong treatment, or a short term preventative measure (which having read about it I can not imagine it is). As I say, more information may resolve all of my concerns.

Thanks again for your thoughts on the subject.

Hi Chris, Sounds like your neurologist is definitely concerned about this being very active as Sue said. How you got any further forward or answers? The blobs on my mri can’t be taken as definitive proof due to the machine having low resolution - so I’m reading the forum to remind me that most of us are in limbo.

Hi DK

It’s frustrating that everything regarding this condition appears to be decided by inference or best guess. I have not seen the neurologist yet, hoping he has some impressive answers though. Having spoken to two already, both of whom had access to the same information, one of whom was suggesting that it could be an isolated incident, while the other has come out all guns blazing with aggressive treatment. It certainly gives the impression there simply is no right answer.

I am also still confused as to how activity level can be established from one incident.

I saw your thread, very frustrating for you. My only assumption is that they were hoping the low res MRI would have showed nothing of concern. It certainly is exhausting worrying about what might be while no answers seem to be forthcoming.

So, Covid complications struck again as the neurologist I had spoken to on the phone was not as familiar with my case as the neurologist who had secured the option of Tysabri for me. My MRI did show older lesions (which I never felt symptoms from) and the reason for the mistaken cancer diagnosis was a tumefactive lesion… So as it stands Tysabri is still very much an option (the only infusion treatment currently in play thanks to Covid) but I have held off agreeing to anything until my JCV is back. Less efficient oral tablets are a potential alternative.

Hello,

Reading your story I can see some parallels, I was diagnosed with MS end of January 2020 and had my first Tysabri infusion in early March.

And at the time everything was happening I had 1 symptom free week and I thought for a second, is this right? I feel grand, I’m ok! And then a minute later all symptoms appeared again, in fact in last 8 months I only have had 2 weeks in total symptom free. Everyone speaks super highly of Tysabri. I have had 4 infusions and hoping to have pretty life ahead! And from what I have read the quicker you start, the better long term results will be.

Grab the chance with both hands. It gives you the best chance of staying as well as you can for as long as you can. MS has given you a nasty taster of what it has in store for you if you don’t get on top if it, and fast.

I have had highly active RRMS (like you) for 20+ years. If I had been able to start Ty back in 1999 instead of 10 years later, I would be much less disabled than I am now. In the past 10 years on Ty, I have had no relapses and no sign of progression of the disease. The previous few years pre-Ty had been carnage. The secret is to get started before the carnage happens, leaving its trail of permanent destruction and disability. I wish I had had your chance, but never mind that: I am just happy that you do.

Go for it, and good luck.

Alison

Thankyou Anne and Alison,

My JC screening came back negative, which was a huge relief. As such I am now awaiting contact from St George’s, hopefully Tysabri will keep everything at bay. The MS nurse I’ve now been assigned is very helpful too, As you’ve both said, getting ahead of it seems to be the most important thing and you’re quite right Alison, experiencing what it’s capable of has made me want to get as far out ahead as possible.

Thanks again,

Chris

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