Hi everyone
I have had MS for about three years that I know about and I’m currently taking tecfidera. It’s been relatively quiet except for being constantly exhausted. I have however been reading Bart’s Blog and looking at getting one of the highly effective treatments. The ones I’m interested in are Cladribine, HSCT and Lemtrada. I have an appointment with the neuro coming up and I wanted to get any thoughts about any of these options. After reading the Bart’s Blog they seem to be pushing for Cladribine although it’s not licensed but I can’t seem to find much about side effects, mabe I’m not looking in the right places. HSCT seems like a big risk but with potentially huge gains but I’m not sure if the gains are any different to the other two. Lemtrada I worry about the risk of secondary autoimmunity after the treatment. Basically what I’m asking is has anyone got any thoughts on any of these and do you think I’ll be able to persuade the neuro to give me one?
Thanks in advance
Hannah
Hi, What were your symptoms that lead to your MS diagnosis? You mention your symptoms have been quiet, do you mean since taking Tecfidera or always?
When did you have your last MRI scan?
My feet went numb/tingly and then it spread to my hands. I also had the electric shock thingy after diagnosis and optic neuritis but those were both well over two years ago. I had my last MRI about 2 years ago. I have times when I do feel a little bit numb but nothing really since about Mach 2014.
Hi, I’m also on Tecfidera and I have a brain MRI once a year on this drug, from when I started taking it.
How long have you been on Tecfidera? Was it your first DMT?
You could be due a MRI scan, if I was in your shoes I probably would ask for one as it’s been two years.
Hi. I was dx at end of December 2014 and have been on Tec for about 14 months. I had another MRI a few weeks ago and managed to get a copy; the neuro says ‘no significant changes’ and absolutely to continue with Tec as ‘it’s still the best for me’.I was quite surprised as I felt that there had been some deterioration in the past year.
My next appointment is in October. I’d be interested to hear what your neuro says about changing.
I also get the fatigue thing, usually in the evening, but I think it’s the MS.
Louise x
I have been on Tecfidera for a year and a half. I was on copaxone but I was getting massive bruises and had a relapse after a few months.
Yeah I was going to ask for one when I go see the neuro.
Thanks for the help.
Hi, Sorry to hear of your experience on Copaxone.
You could discuss with your neuro if there is new activity on your next MRI scan then a DMT change could be considered. I’m sure it would be fine to discuss this before you have the scan. If there are new lesions it may be difficult to know how old they are unless they enhance with contrast. You could discuss Lemtrada.
xx
Hi
Well not that I’m especially your intended respondent, but having looked into the pros and cons of lots of DMDs, my feeling is that as you are on a DMD that suits you and is preventing relapses, then there is no reason to change that, particularly to something as potentially risky as Lemtrada, HSCT or even Cladribine (but do look at Sewingchick’s’ recent threads on Cladribine).
I have been very convinced at different times by the new more risky DMDs drugs for people with highly active RRMS. But if you’re not frequently relapsing or having disability progression, or have serious changes on MRI, then I’d stay on what is working for you. The risks for the newer more highly effective drugs are just too much if you’re not relapsing frequently.
However, what I would suggest is that you look at your fatigue levels. Too often we go into appointments with neurologists and talk predominantly about DMDs but ignore the symptoms that are causing us day to day problems. So, perhaps you need to look at fatigue management, with drugs (preferably Modafinil but otherwise Amantadine), with fatigue management techniques (referral to OT?), physiotherapy or exercise regimen (referral to Physio?), or vitamins/supplements.
Best of luck whatever you decide.
Sue
Thanks for the advice Sue and I can totally see where you’re coming from. It’s just that I’m 29 and I don’t want to spend the rest of my life worrying about when I’m going to have the next relapse. I’m a complete worrier and MS is just always there in the back of my mind and I keep thinking am I going to be able to do this, that or the other and what if this or that happens. At least if I have done something to sort out the MS better I will have one less thing to worry about. I also want to be able to take fewer meds, which I hope having one of the highly effective treatments will enable me to d.
I have had and OT referral and they said I’m doing all the right things and I’m currently taking amantadine which isn’t working so I’m planning to ask about modafinil.
Thanks 
I totally get where you’re coming from. If there’s anyway of stopping MS in its tracks, then it makes some sense to attack it with the biggest guns you can get your hands on. You don’t want to reach middle age and wish you’d done something different. It was different when I first had MS, there simply weren’t the drug treatments that exist now.
My worry about Lemtrada is basically the same as yours: secondary auto-immune diseases especially overactive thyroid (aka Graves Disease). I’ve actually had this in my early 20s and it’s not something you want to get. It was (at the time, I’m 49 now so drugs have moved on) difficult to medicate, I was on 3 different drugs and still having palpitations, trouble exercising or even walking up hills without getting out of breath. Ultimately I had an operation called a subtotal thyroidectomy. This is where they remove most of your thyroid surgically. The end result a few years later is underactive thyroid. Which is easy to control, but it’s a bit of a journey. And of course there are other autoimmune conditions that can be caused by Lemtrada treatment. In general, I suspect most (but not all) are easier to resolve than MS, but if there’s a possibility that the Lemtrada won’t work 100% to cure MS and you get another AI condition, then you’re worse off than you are now. And occasionally people have a bad reaction to Lemtrada and end up more disabled than they started. Which is essentially why it tends to only be given to people with highly active RRMS.
If I had the choice of the three treatments, I’d probably opt for Cladribine. Given that your lymphocytes are handling the Tecfidera OK, then they might well handle the Cladribine too (that’s why I couldn’t take either). Which is why I’ve suggested you look at Sewingchick’s posts on Cladribine. And do all the research you can into the drug.
I’m not convinced by the claims of HSCT, I know it’s different now from when Stella Thorley had it, but I still think it’s a bit of a risk. Plus there are two types, one of which is potentially more risky, but also potentially more effective. I think you need to do all the research available before opting for that.
The other thing I reckon you might be as well doing is simply to do all the research you can, then lay out all of the pros and cons (including the unknown and uncertainty factors) associated with every DMD you could possibly go for, including the 3 big guns, and also staying on Tecfidera. Ask your family and friends, those whose judgement you trust, to tell you honestly what they think you should do. Bearing in mind your age and future life choices. Then make your own decision. Only then should you start trying to convince your neurologist of what you want to do. After all, it’s your body, your life, your risk. Don’t expect the neurologist to make all the decisions. (Some of them do have a tendency to make pronouncements rather than ask for your opinion!)
Sue