Hi All,
I had been recently diagnosed as a case of Multiple sclerosis with active inflammation and had my first attack a month ago. Intravenous steroids were given and am currently on Oral steroids for tapering dosage. I had paraesthesias and visual symptoms in right eye, but after steroid therapy, currently i dont have any symptoms except for Urgency and frequency of micturition. My Neurologist after reviewing my clinical profile and MRI progression of lesions opined that I should be started on Natalizumab as a first line treatment for 2 years followed by switch over to other medications. However I couldn’t decide whether to start with the third line of drugs straight away nor could find any inputs from the people who were started likewise. Can anyone who is also on similar treatment with Natalizumab as a first line treatment as opposed to other first line drugs share their experience? Thank you in advance for that.
I have been on Natalizumab (Tysabri) for the last 2.5 years. It was my first DMD and this came about because of a combination of my very active RRMS and a very gung-ho/proactive specialist!
My current specialist is a MS specialist and is a senior lecturer in neurology at the medical school as well as being a senior person at our dedicated MS treatment/research centre. I became her patient after I moved across the country. I was originally diagnosed in London and my consultant there put off putting me on DMD straight away - he explained this by talking about “declining efficacy” but, to be honest, I am pretty positive that his reluctance to start me was more to do with budget that medical reasons. (He knew that I was intending to move from the South East)
Tysabri has been good(ish) for me. I have had no problems with the medication and my very regular MRI scans have not revealed any further lesions. The regular infusions fit in with my lifestyle better than injections etc. I have very regular blood tests and MRI scans every six months or so.
After about 18 months I was found to JCV + so they keep even tighter checks on my bloods to ascertain whether my current level of infection is a safe level to allow me to continue.
Lots of people have a positive experience of Tysabri reporting that it was has stopped regular relapses and some have even reported an improvement or abatement to existing physical symptoms. In my case I have not been quite so lucky – I haven’t had any major relapses (touch wood) but my physical and cognitive issues have remained bad. Since I was diagnosed my history has been one of major relapse with catastrophic effects with some but not total remission. Although I haven’t had any official relapses since settling onto Tysabri I do suffer badly from pseudo-relapses when I have infections causing my memory, fatigue and walking etc to be particularly bad.
Hi Boblatina
Thanks a lot. Thats actually very useful and reassuring information. I am very confused and stuck at crossroads regarding to whether go ahead with my neurologist advice on starting Tysabri straight away or to desist and ask for a more conservative first line treatment like Tecfidera, in view of my current clinical profile with very mild symptoms, associated risks with Tysabri and all. However my neurologist opined that in view of the lesion count and progression in number over a months period alone, its better to start me off on Tysabri as first line DMD, irrespective of my clinical picture, insisting that even if I turn out to be JC positive, still we stick to the plan for an year or two followed by a switch over to other drug.
Can you please tell me if you dont mind what were your presenting symptoms and the rationale your neurologist discussed for labelling you as very active RRMS and to start on Tysabri straight away instead of other treatments?
And another major concern to me is if required in future if I need to be put back on Tysabri after the switch over, wont it actually increase my risk of PML? and was it discussed with you whether starting straight away on Tysabri, exhaust options for next line of managements in the long term future or not?
Sorry if I had asked you too many questions or too private, but I am really worried. Thanks a lot to you again for all this info and appreciate really any other add on valuable advice from you.
Hi Boblatina
Thanks a lot. Thats actually very useful and reassuring information. I am very confused and stuck at crossroads regarding to whether go ahead with my neurologist advice on starting Tysabri straight away or to desist and ask for a more conservative first line treatment like Tecfidera, in view of my current clinical profile with very mild symptoms, associated risks with Tysabri and all. However my neurologist opined that in view of the lesion count and progression in number over a months period alone, its better to start me off on Tysabri as first line DMD, irrespective of my clinical picture, insisting that even if I turn out to be JC positive, still we stick to the plan for an year or two followed by a switch over to other drug.
Can you please tell me if you dont mind what were your presenting symptoms and the rationale your neurologist discussed for labelling you as very active RRMS and to start on Tysabri straight away instead of other treatments?
And another major concern to me is if required in future if I need to be put back on Tysabri after the switch over, wont it actually increase my risk of PML? and was it discussed with you whether starting straight away on Tysabri, exhaust options for next line of managements in the long term future or not?
Sorry if I had asked you too many questions or too private, but I am really worried. Thanks a lot to you again for all this info and appreciate really any other add on valuable advice from you.
Hi
I have been on Tysabri for 7 months now. I am JC positive but plumped for Tysabri as I didn’t like the side effects of other DMDs. I have a 1 in 700 chance of PML.
I had 5 relapses last year, since being on Tysabri I have had 1. I guess therefore it has helped. I get blood tested every 3 months and MRI every 6 months.
I wish you all the best.
Thank you Pops for sharing.
My JC virus status is not done yet and irrespective of its result my doctor wants me to go on Tysabri.
I have heard before of people being put straight on Tysabri because their RRMS looked very active. Hurrah for proactive neurologists - there is much to be said for hitting nasty-looking MS hard and fast.
I have been on Tysabri for 5 years, not first-line, though; I had been on Avonex for the previous 10. By the time the Avonex had stopped working, I didn’t half need the Tysabri! If I had started it a few years sooner, I might not have lost as much ground before the Tysabri calmed things down. Who can tell? In my own case and with the benefit of purely personal hindsight, had I been offered Tysabri earlier I would have gone for it like a shot…as long as I was negative for the JC virus. Had I been JC+, that would have been a much tougher decision.
Why only 2 years, by the way? Are you JC+?
Alison
Hi alison
My JC virus status hasnt been done yet. Thanks for sharing.
1 Like
if you switch to tecfidera, that has similar risks to tysabri.
there has been one reported death so the ms team are very careful, giving me appointments every 3 months to check my lymphocyte levels.
mine have dropped since i started on tecfidera but my ms nurse said it was normal for that to happen.
give tysabri a try.
look on it as an opportunity to show ms who is boss!
carole x
OK, well that will be another piece of information for you.
None of the DMDs are perfect and none without risk. New ones are being developed all the time too. The way I look at it: the most a DMD can do is to hold the line for you and keep your MS at bay until something better comes up. A few years’ damage- limitation on an existing DMD and who knows what will be coming on line to help you more in the future? When that great new thing comes along, the healthier your central nervous system is the better your chances of making the most of it.
In the meantime, your best bet, it seems to me, is likely to be getting on the DMD that your neurologist thinks most likely to control your MS and keep you well.
One thing I would be asking in your shoes: if you go on Tysabri for two years, what then? When one has very active MS, the disease activity that has been controlled by the drug seems sometimes to come roaring back once the drug is stopped and not replaced by something else to do the same job. The more active the MS, and (therefore) the stronger the drug, the more marked the effect tends to be. It doesn’t happen to everyone by any means, but it is a risk to discuss, I think. I wouldn’t want to come off Tysabri without a firm plan in place to replace it, that’s for sure.
Alison
Hi Alison
The concern you already addressed is actually the one bugging me a lot. If I need to take Tysabri which everyone opines to be the best drug I should take on the package of risks it comes along with too. If I choose the other way as Tecfidera I might be taking Second best but with reduced risks. And yeah that “rebound” after withdrawal from Tysabri is actually a major concern. My Neurologist actually proposed to put me on Rituximab/Ocrelizumab after withdrawal from Tysabri instead of standard DMDs. Any info on those drugs? He claims they are superior and prevent Rebound after Tysabri withdrawal, but being used only as Off label drugs to MS. One added risk factor being those drugs too have an inherent risk of PML though not as high as Tysabri but yeah definitely there. So that is the dilemma I am stuck in - whether to go ahead with the best drug plus risks or the second best without? Any advice and info on Rituximab is well appreciated. Thank you.
Regards
Saisriharsha
Thank you catwomanCarole58 for the advice
Like I said in the above post. Thats the dilemma I am stuck in. But will give it a clear thought and keep my decision up to date in this forum. Thank you guys all of you for helping me out through this and also helping me to come to a conclusion.
Any Info on Rituximab as a treatment is well appreciated please.