Lemtrada 3 months on

[maltom]

I'm based in Northern Ireland and was fortunate to get on one of the early Lemtrada treatments in June 2015. I would like to share the experience and after effects.
The 5 day treatment was reasonably uneventful with just 2 days of a rash at the end.
The first 2 weeks after leaving Hospital I felt great and was full of energy and able to walk 2– 3 km without any problems. I was fullof energy and any pain that I had in my legs was gone and despite everyonetelling me to take it easy I was like a duracel bunny. (Steroids maybe)
Then after 4 weeks I began to feel tired and the sorenessreturned to my legs. I had my first monthly blood tests and all was normalexcept a low white blood count and lymphs which the nurse said was normal afterthe treatment.
The next 4 weeks I continued to get the soreness increasingin my legs and the fatigue also increased with again normal bloods but still alow WBC.
It is now 11 weeks after the treatment and I’m getting very downand frustrated that I seem to have less energy than previously and my legs arevery sore and after any sort of exercise the left leg is so weak it begins todrag and shake. (this was bad before the treatment, so not new).
What I would like to know from anyone out there who has hadthis treatment:
Is this familiar? If so does it take a longer period thanthe initial steroid filled optimism to show some improvement or benefit. Doesthe fatigue go away with time?

Thanks for any feedback and I am happy to answer anyquestions on the treatment.

[BadAttitude]

Hello, Maltom.

I had the worst relapse in my life at the same time I went in for my Lemtrada. Loss of balance, impaired speech, impaired memory...it was miserable. I too benefited from the five days of steroids, but it is bnecoming apparent to me that they were treating the acute symptom, while the damage from the relapse persists. I received physical and speech therapy to try to improve my balance and speech, and so far I cannot say it HASN'T helped, but I think the Lemtrada can only work to preserve what you have going into it.

If you sustain damage before the Lemtrada can work, all it can do is prevent further relapses, not necessarily repair the damage. However, as I experienced with Tysabri, once the relapses were prevented, my system had time to recuperate and I was able to get back up to about the same level as I was pre-relapse. So I hope that is the case with me, and you too, so that our various bodily systems can grow new myelin and re-route neural pathways. In the meantime, there is nothing to suggest that therapy is NOT effective at helping you improve, so I continue with my exercises.

It is good to hear you reference "any type of exercise" when talking about your leg/symptoms, because it means you're getting out there and moving around. Just remember that you aren't starting out with a new, pristine body- just one that has regressed to where you were before the Lemtrada. Any gains you make going forward will have to be made from your new baseline.

That's not to say you won't make gains. Don't allow the process to discourage you from continuing to strive to improve. You can even have fun with it if you log your progress. Just take the time to jot down some notes (or log them into your smart phone or whatever) to let yourself get an idea of where you are at and in the future, where you were. Every little advancement is still an advancement. Be patient with yourself; You can do this!

[alk]

I've heard nerves grow slowly. Some people on the facebook page said it took them a full 6 months to feel normal again. Even though some people bounce back faster, it sounds like you're still in the normal range.