I have been on DMD-Rebif since Aug 2011 and experience MS symptons such as tingling in legs,stiffness and tightness in legs,burning sensations. I have one/some/all of these symptons most days. Just really wanted to know whether these symptons are with me now for ever OR are they little relapses occuring frequently and does the rebif prevent them getting worse OR is the rebif not working at all. I was diagnosed with RRMS 15 years ago.
Basically do other people who are on DMDs still get symptons such as I experience or have the DMD stopped them getting them.
I am sorry to read that you are (perhaps) in a relapse, despite being on Rebif. Snap! I am too. I have been taking Rebif for years. I used to have, on average two serious relapses each year, and though I use DMDs, and I might have fewer of these relapses, and they aren’t nearly as bad as they were before, I do unfortunately still get the blighters. Unfortunately too, I had also thought that taking DMDs would stop them altogether, but this is not the case.
Last year I had to have two courses of 500mg of Medrone for five days, and I have had one course of the devil’s pills last month, but I think I will have to have more as the symptoms are still here. I hope that your symptoms do not turn out to be a relapse, but either way, good luck and good healing.
Thanks for replying Moira and sorry to hear that you have had some relapses recently.What I find difficult to know is whether the symptons I have are an actual relapse or just residual symptons which I am always going to get and just have to put up with. I am seeing my neuro this week for my yearly appointment so will see what he says.
I think you’re doing the right thing in clarifying things with your neuro, though given the unpredictable nature of this ridiculous condition I would be surprised if he can give you a definitive answer. Good luck though!
My understanding of DMDs (I’m taking Copaxone) is that they on average are meant to reduce the likelihood of relapses by a third. Certainly none of them are, unless you’re very lucky with the averages, meant to stop them altogether. It might well be that you’ll need to be taking them for a while before your neuro can make judgements as to whether or not the Rebif is working. Your body can take time to build up enough of it.
I’m the same Cat, my relapse started late June and it has never fully gone away in that time (I started DMDs in November). I ask at the hospital if they expect these symptoms to go away and they don’t know, may fade slowly, but don’t count as a relapse unless they substantially worsen, or new different symptoms appear.