Hello. First post on here, so hopefully in the right place.
I’ll start off with a brief history.
I was DX with RRMS in Dec 2015 after having 2 relapses that year. The first one was in May and the second was in Nov. The first time i had any symptoms was back in 2011, but they thought it was Guillain Barre syndrome. The years after this i didn’t feel too bad. I would get tired very easily and fall asleep as soon as i stopped moving but put this down to working hard. The relapse i had in May knocked me for six, was signed off work for 6 weeks and generally felt awful. I got referred on to the neurologist ( after many trips back to the docs) and had my first MRI in Oct. Had my second relapse in Nov, another 6 weeks off work. I’ve had various symptoms including numbness and tingling in the left arm and both feet/legs, vision disturbances, fatigue, balance, mood swings, restless legs, toilet troubles you name it. The results came back in the Dec. It was completely unexpected and im having difficulty getting my head around it all.
I went to see the specialist consultant in January and had to have another MRI to see if the MS was active. It is. I have been given 2 options on which treatment to have. Either Lemtrada or Tysabri. I’m leaning towards the Lemtrada, but what i really wanted was some advice or some information from people who have had first hand experience with either of these DMD’s. I like the idea of only having one set of treatment over the year, but also worried about the possible side effects and the impact these will have on my personal and working life. Work is very important to me, i have worked since i was 13 and the thought of not being able to do my job and support my family is freaking me out. I suffer with Mood swings, mainly when im tired, but i find it very difficult to give in and rest even after my wife suggests it. I don’t want to push my family and friends away, but i feel very alone in all of this.
Any advice or information would be gratefully received.
Tysabri has done a good job for me for years. Lemtrada wasn’t available when I started, so Tysabri was the only show in town for highly active RRMS that was not taking any more notice of the first-line DMDs. I have no idea what I would have gone for had there been a choice.
The drug that has the lowest (negative) impact on your personal and working life will be one that keeps you well. Either of your options has a very good chance of doing that. Personally, I think that getting on one of them fast is way more important than which one you go for. Sooner the better.
I started Tysabri in November after 5 relapses in 2015. I chose it despite being JC positive because I wasn’t happy with the potential side effects of Lemtrada and also if Tysabri doesn’t help me then at least I have an alternative. If lemtrada doesn’t work there are not a lot of alternatives.
Everyone is different and of course it is your choice. Only you can decide what is best for you.
I was meant to be given Lemtrada last year, after being unresponsive to Tysabri, but because I’d be the first person in this area to be given it the organisational logistics dragged on and on and I went for 5 months with no DMD at all.
My MS nurse pushed to get me on Tecfidera in the interim (though not quickly enough for me to avoid the coming-off-Tysabri relapse, just 3 and a half months since the last one) but when I saw my neuro he wasn’t up for that idea at all - I mean hopping between treatments - so he said he’d keep me on the Tecfidera unless I had problems with it, which I haven’t so far. 10 months relapse free! That’s the longest since diagnosis in August 2013
I know that if I was given the choice of the 2 right now I’d pick the Tecfidera like a shot.
I really WASN’T looking forward to how ill the Lemtrada treatment was potentially going to make me, especially as I was going to be given it as an outpatient. I’d need to stay with my mum for the 5 days as my MS nurse said I had to have someone there in case I got especially ill. The hospital’s 30 minutes away and I’d have to be at there for 8:30 every day, just the thought of having to crawl out of bed at some horrible hour, feeling sick and feverish, then manage to EAT and get myself ready for a 7:30 pick up…urgh! Especially as I suffer from car sickness anyway, and if I’m feeling ill already? And then back in the car to come home…yeah, I was dreading it.
Yep, I’d definitely go for the Tec given a choice!
Well look at that, you said Tysabri not Tecfidera…my bad! But as I said, Tysabri didn’t work for me, I had 2 relapses - both just 5 months apart - whilst on that.
I considered Lemtrada but MS nurse said to try Tecfdera fret as is less harsh on the body. I start this Frday. It is worth looking at this drug as is new out as is Lemtrada. Good luck.
I’m also looking for advice on this. I’m meeting my consultant on Monday and he provisionally suggested Lemtrada. I’ve spoken with a few people who suggest the better option is to go for Tysabri as Lemtrada limits further treatment if things do not work. Like you, I’m concerned about the impact on my life. What decision did you make? What is the typical time period before treatment starts from your review with the consultant?
I was diagnosed in September, chose Tysabri in October and started my infusions in November. I have my forth infusion next week. Mine was done quickly as my diagnosis was severe RRMS but it shows that treatment can be administered swiftly.
I saw my specialist in January and had a second MRI with contrast to determine if my MS is active. I’ve since then seen the ms nurse and will hopefully be seeing her again soon so I can get started on a DMD. The results came back with multiple new lesions since the first one I had in October.
After reading other people’s experiences I’ve decided to go for the tysabri. If this doesn’t work well for me then there is still the option of Lemtrada. Although it’s a scary prospect of starting something so “risky”, I need to try something. I’ve had 3 relapses in 10 months and getting a little fed up of it.