Well, you will be the best judge of how you feel off symptom meds (is it symptom meds you are talking about here?) because you are you and no one else is. So you are absolutely the only person who knows, and no one else’s opinion on the matter (including your mother’s) is worth a damn. The thing about about symptom drugs like that is that how you feel on them is the only thing that matters. If you feel great without them, then happy days: no need to put up with any of their side effects.
DMDs are a different matter. How you feel on them is hardly the point at all: the things that matters is how good a job they do to calm disease activity and help you dodge crippling MS bullets down the line. So they do a completely different job. Some people, me included, feel that a degree (within reason!) of inconvenience and risk is worth putting up with in return for the benefits, uncertain as they are. That’s easy for me to say because my MS has always been aggressive, so it wasn’t hard for me to spot where the big risks lay - the spectre of more brutal and crippling relapses has always been snapping at my heels, and this does concentrate the mind wonderfully. Your MS has only recently shown its teeth by the sounds of things, and that makes it more of a mental wrench for you now to contemplate reaching for the stronger medicines. But it is showing its teeth, and that is something you need to take a long, clear look at, painful as it may be. If you’ve stopped your DMD rather than just symptom drugs, then I’m afraid I am in accord with your mum.
Maybe it’s time to step back and review the whole DMD issue with your neurologist and decide on a way forward that you feel comfortable with?
Hi all - I was just searching for something lemtrada related and was reminded of this thread by my browser history.
I see a few people asking how everythings going since I was last on - so far so good. I haven’t had any relapses or deterioration since having the treatment. In particular I’ve noticed recently that I don’t have the same sort of brain fog and fatigue that I used to have. My own theory (based on nothing in particular other than my experience) is that brain fog is caused by fatigue which is caused by underlying MS activity. Even after my treatment I was still aware of the latter through a small twitching muscle or the like but I haven’t noticed any of that recently which aligns with my lack of fatigue.
Anyway, the reason I was researching was because I have suddenly came up in an eczema-like rash all over my body. I haven’t had anything like that before and wondered was it start of lemtrada side effects. I haven’t found anything conclusive but I’m seeing my neuro next month so I’ll see what they say.
ive been on tysabri for nearly 10 yrs and am now changing to lemtrada…can anybody tell me how long they had off work following their first weeks treatment please? I’m trying to get a rough idea, I know it’s gonna be an individual thing but I have no idea! X
i enjoyed reading your Lemtrada posts. You have a great way of explaining honestly without scaring your readers - A big thank you for being so level headed.
I’m scheduled to start Lemtrada round one on 5th Feb 2018. I’m hopeful yet pretty frightened at the same time. As with most of my worries it’s fear of what’s ahead, I’m certain that once I’ve started treatment I’ll relax a bit more. I think fear makes my symptoms worse, so I am keeping my mind where my body is at all times these days.
Hi Sarah - I found the treatment itself really not that bad so I wouldn’t worry too much about it and, as you say, worrying ain’t good for anything. At its worst it was uncomfortable when I had the rash but it passes and is hopefully well worth enduring.
Re. the post above. I had a week or two off but its definitely an individual thing as I know of someone who had 6 weeks booked off after the second infusion. For me that would have felt like taking the piss but maybe that person knew it would be tough on them.
How are you feeling at the moment? My wife has been recently diagnosed with MS and Lemtrada is one of the options. I’m sure your probably sick of answering these questions.
i have been reading this thread all through this morning but realised now your last post was Feb 18 this year.
Hi Pollos - I don’t actively post on this forum but I do occasionally browse and check if anyone has been asking questions on my thread.
I’m still keeping well - no relapses, no side effects (although my neuro told me that most people don’t develop any until a couple of years later) and just living life as normal. I know it doesn’t work out for everyone but I feel very lucky to have received a treatment that seems to have worked really well.
Hi Pob, Thanks for replying. Sorry its taken me 7 months to log back on. I had my 1st Lemtrada treatment back in Feb and youre right - the worst bit really was the hives - they were seriously the itchiest thing I’ve ever known. Thank heavens for anti-histamines I must say though that I wish id given myself more than a week off work - next Feb im gonna take 2 weeks, although id prefer 4! I felt pretty dreadful afterwards for about 2 months, mainly due to heavy fatigue. I’ve been having my bloods taken regularly since and all is as it should be. On the whole I don’t feel any different to before the treatment but I haven’t had a relapse - which is the point. I’ve an appointment with my neuro in a few weeks and I wonder if they look at the brain lesions again soon to see if they are reducing/less active or not. (at least that’s what I hope after being blasted with Lemtrada?) I wonder have you had any post Lemtrada brain/spinal checks?
@SarahEliz - I have had MRIs (brain but not spine - I’ve never had any spinal checks) every 6 months since treatment and these have shown no new lesions. It never occurred to me to ask if my existing lesions looked any better - will have to remember that for next time
Just replying to my own post on this as I know that this is a thread that regularly comes up when people are searching for Lemtrada - so wanted to update on the open point above.
In a Bart Blog post today (25/20/18) they confirmed that it is now possible to get a third course of Lemtrada on the NHS.
56% (77% of the original participants were included in this analysis) required no further doses of alemtuzumab, i.e. only the first 2 cycles a year apart
88% relapse-free
78% with disease stability, i.e. stable or improved EDSS scores
67% free of MRI activity
Brain volume loss from baseline though to yr8 was -1.83% (i.e. normal rate as those without MS)
Side effects were the same as previously described
Just reading through this thread and it brought back lots of memories.
I was on the Campath phase II study in 2009. Nine years later after many highs, and the odd low, I am still part of the Campath/Alemtuzumab/Lemtrada journey.
All i would say to anyone contemplating, or about to embark on this journey, don’t be afraid, and embrace it. I was given the option of Clinical trial (Alemtuzumab) or Tysabri.
I chose the trial and don’t regret it for one moment.
I would be happy to share pros and cons with anyone and everyone.
