Hello,
I was diagnosed with Relapse and Remitting MS in 2014 and have been on Tecfidera since then.
Before I was diagnosed I had 3 major relapses, the most extreme leaving me with a completely numb right leg and having to use a stick.
Whilst I haven’t had any major relapses since I began Tecfidera I have had countless sensory relapses. I have also had to quit my job as my symptoms kept flaring up to the point where I believed I was having another major relapse. As a 24 year old this is extremely hard for me as I feel as though my life has completely stalled at this point.
I haven’t ever met another person with MS so I haven’t had an opportunity to talk to anyone with this disease and have only spoken to my nurse and my neurologist - who haven’t been much help if I’m honest. I regularly check the forums on this website whenever I have any queries, but this is my first time posting anything.
I’m starting to consider trying another form of DMT and I wanted to know what experiences people here have had with them? Also, what experiences have people had with Tecfidera?
Am I being too optimistic to think that I shouldn’t constantly feel like I am in a state of sensory relapse or is that just life living with MS?
Any opinions/experiences would be really greatly appreciated!
Hi i’m on Tecfidera, been on it 15 months now. I was doing ok but I now feel I am progressing quite fast on it and am considering asking to change DMT.
When did you have your last MRI scan and did it show new lesions? Are these new symptoms - the ones where you feel like you are constantly in a state of sensory relapse?
The DMT option I have been thinking of is Alemtuzumab rather than a maintenance DMT like Tysabri, i’m JCV + anyway and the rebound effect post Tysabri is a concern.
Hi,
I had one in November/December of last year and it came back showing no changes at that time.
Some of the symptoms are new, some are worsened old symptoms.
I always had manageable residual symptoms originally after going on Tecfidera such a tingling and numbness and fatigue but these have gotten worse.
Sorry for questions but what is a maintenance DMT? and also what is JCV? 
thanks!!
I have no technical knowledge whatsoever; only anecdotal experience from my sample of 1. In my own case, I have usually been able (I think) to know the difference between permanent residual damage left by incomplete recovery from previous relapses (i.e. there most of the time and stronger when fatigued or very stressed or both) and new activity that comes and builds and goes over time (i.e. new relapse). I don’t pay much attention to the first; I do pay attention to the second.
If you are getting lots of relapses, I think you are right to be wondering whether the DMD you are on is strong enough to hold your RRMS at bay and minimise the damage that it is doing to your CNS. In your shoes, I would certainly be asking my neurologist about that. Stronger drugs come with extra risks, of course, but I’m sure you know all about that. An up-to-date MRI might be a useful piece of information for you and your advisors.
It does no harm to express concerns; doctors tend to assume that all is well unless you are very obviously in trouble - if you are concerned, you need to say so and why quite clearly.
Alison
A maintenance DMT is one where you have to keep taking it for the treatment to work - a pill every day, or injections a few times a week or an infusion once a month. Most of the MS treatments are in this category. The other kind of treatment is where you have something once, and may need another treatment a year later but you don’t have to keep having it. The three treatments that fit into this category are Lemtrada, HSCT and Cladribine. They all seem to be much more effective than the maintenance treatments.
The JC virus is the John Cunningham virus, About half the population carry this by the time they are adults and it is generally harmless. For people having immunosuppressant treatments, the JC virus can give them PML, a horrible demylinating disease, which can kill people or leave them severely disabled. It has been seem most frequently in people on Tysabri (although it’s still very rare for them), and there have also been a very small number of people who have got it after taking Gilenya and Tecfidera (I think).
Oh, and even if you start off testing negative for the JC virus, you may get it once you are on the treatment.
Thanks for this! I had no idea that there were two types of treatment so very different. When diagnosed I was only given information about Tecfidera, as it was the most positive sounding treatment and was very newly available at the time.
I have my lymphocyte count tested each time I visit the nurse as they are aware of the risk of PML on Tecfidera. I find the potential for this to be quite scary and always wonder, when having problems cognitively and pains in that area, if I am developing something - even although I know it is silly!