Hi guys. My names Clyde, I’m a 39 year old Painter and Decorator. Male.
I’ve just joined this forum having been confirmed with very active RRMS.
A little run down:
optic neuritis confirmed in about March this year following eye pain and loss of some colour.
Been having tingly legs, very tired, and suffering from dizzy spells when standing up etc on about 60% of the time.
Sometimes nearly black out.
I actually had funny, cold like sensations in my feet last October but was just prescribed folic acid.
I had a diagnosis of MS confirmed a days ago, Following an MRI etc. Found two brain lesions at the time.
Since had a further MRI where they found a few more, and looking into ones on the spine also.
I’ve been found to be high positive for the JC virus, I’m very confused about treatment. Tysabri or lamtrada are my options.
The nurse has been very nice, but I feel very confused about the Tysabri (PML) risks.
Was told ‘it’s my choice’
any info regarding risk, or the best treatment. Any info to be fair, would be greatly appreciated. I’m very confused and a little disjointed currently. Information overload from the NHS.
It seems to me a pity that your medical advisors have not given you a bit more help with your drug choices (having said which, it is impressive that they have clearly taken your active RRMS seriously and are getting you straight on to one of the most effective medications - that is really good news).
I have been on Tysabri for five years and doing well, having been on one of the milder drugs for a long time before. There wasn’t much in the way of JC virus testing back then and I wouldn’t have cared either way because I was so keen to get on something that worked and there was no real alternative to Tysabri (no Lemtrada).
Five years on, the picture is different: people know their JC status, and Tysabri is no longer the only show in town for those of us with very active RRMS.
I am no more of an expert than you. For what it’s worth, in your shoes I would certainly be thinking seriously about Lemtrada. It is one of the big guns, so fingers crossed it should do the trick for you. Quite honestly, I wouldn’t be too keen to start Tysabri if I knew I was very JC positive and therefore faced the possibility of having to come off it again in a couple of years because either I or my doctors didn’t like the look of my latest risk profile. The trouble with coming off Tysabri is that the suppressed MS activity can come back in a hurry - the rebound effect that they have probably mentioned to you. Why bother with all that when Lemtrada is a powerful option for someone whose MS needs serious treatment? For sure, it has risks of its own - what powerful drug doesn’t? - but the hazards are not, as I understand it, in the same league as Tysabri for a person who is very JC positive.
The thing I would definitely do in your shoes would be insist on a clear steer from my medical advisors - it is what I have always done in my own case. I have always asked the straight question: ‘From what you know of how my MS is behaving, what would you recommend as the treatment most likely to keep me well for as long as possible and with the best balance of risks and benefits?’ In the end, it’s our choice - they’re right about that - but they’re the experts and it is their job to advise.
I just read your post and thought all the same things as Alison. I’d repeat them but that would be very boring.
In your shoes Clyde, I’d be looking seriously at Lemtrada. It’s got it’s own risks, and some side effects can be serious, but if you are suitable for it, then it’s the closest thing you can get to a ‘cure’ (it’s not an actual cure exactly but it’s not far from it).
Find out as much as you can about the two options, then when you discuss with your neurologist etc, you will be able to make a more informed choice. Obviously getting as much of a steer from your neuro team as possible.
My understanding is that tysabri is a fab drug if you can tolerate it and stay on it. The risk is that as you are jcv+ it is probable you will need to change DMDs sooner rather than later - in which case there may be a rebound risk. (Barts hospital have written a number of posts on this on their blog site - worth googling if you have t found it). Not the end of the world as there are “bridging” DMDS to help manage this - but assuming they haven’t licensed a new better drug (eg ovtelizumab) by then you’ll be back looking at Lemtrada again - and it is proven to be more effective in treatment naive patients with little sustained damage. At least this is the line of thinking which has got me to be booked in for my first round of Lemtrada next month. Obviously using a very personal choice. Resources I’ve found helpful (in addition to the Barts Blog from Dr Giovanni at Barts Hospital and and research unit) are Shift:MS (very helpful forum site - and properly moderated), and blogs from people on treatment - David’s Campath Journey follows the 12 years history of a chap on the original trial for Lemtrada (and is what gave me hope in my first dark days post diagnosis earlier this year) and Tracey’s Lemtrada Journey is a very detailed blog from a lady who has just had her second round (and is doing very well and happy to answer questions). There are also dedicated facebook sites for people on/ thinking about both treatments. I’ve found the Lemtrada one very helpful.
apologies for not posting links - on a trekking holiday in Spain and in the Galicia Cain hills on an iPhone with very little I teensy access to bashed this out before I loose signal! (which also explains the inevitable zillion typos!)
Thank you guys for all the info. I’m completely new to all this so it’s baffling. It’s looking like the majority would plump for lemtrada due to my high JCV counts. And I’m feeling the same way.
A little concerned about my day to day health - virus’s etc as I’m a self employed decorator. Taking time off is not an easy option. But I guess that’s the way it is now!
I’ll read up the blogs and info kindly supplied by you guys. Might help me make a choice.
Sadly my partners mother died 5 years ago with progressive ms, my job now is to convince her I’ll be fine!
It seems to me that the best way to keep functioning well at work when you have RRMS is to take a DMD strong enough to keep your MS at bay. MS is enemy number one, and dealing with it effectively is the thing - the rest is detail. It is great that your medical advisors have spotted from scan evidence that your MS it up to no good whatsoever BEFORE it caused you really bad problems that cannot be reversed. I am very pleased for you that they take the view that hitting active disease early and hard is the right approach - I couldn’t agree more.
Lemtrada is one of the few things that really can stop even very active RRMS in its tracks. With a fair wind, that should give you a great chance of proving your point to your partner.
I was diagnosed with acute RRMS 11 months ago. I am JC positive and my choice was tysabri or lemtrada.
I chose tysabri for one reason. If tysabri did not work for me then I could stop and go on to lemtrada, if I had started on lemtrada and that didn’t work then I couldn’t switch to tysabri. By choosing tysabri I gave myself another choice later on down the line.
I started tysabri 9 months ago with a risk of 1 in 800 of getting PML, that was a risk I was willing to take. The tysabri really helped and I’ve only had 1 relapse this year.
Hi all does anyone know if you can build up muscle in arm or shoulder that has gone weaker? I have a little numbness and a small amount of muscle wasting Cheers all john
