Last reply 9 months ago
Lemtrada long recovery

Hi everyone
I hope you are well on this gloomy February day!
I’ve posted here a couple of times moaning about my post lemtrada fatigue and ongoing balance problems….just wondering if anyone on here who had had lemtrada and felt wiped out for the first 3 months…had any positive stories to reassure me that eventually (if I am patient) I will soon reap the benefits 😄 I am going to the gym a couple of times a week plus yoga weekly and see a neuro Physio but still not anywhere back to my pre lemtrada ‘normal’ any inspiration so gratefully received x

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mmilly
9 months ago

I’m in the same boat as you and am looking for the same thing…some positive stories. I finished Round 1 at the end of January and felt completely out of it for a few days afterward and then a little better every day. I never got back to my pre-Lem normal, but was definitely feeling better and positive. Now, for the past week or so, I’ve been feeling achy, weak, feverish, chills, and headaches they talked about started. It all begin daily around mid-afternoon to early evening. Headaches are at night or middle of the night. I’m sure it’s temporary (I mean I have to believe that) but was looking for someone to say that it only gets better. I have a check-up in April but didn’t want to have to wait that long to ask how long I’ll feel this way.
Best of luck to you and please keep me posted.


joanne46
9 months ago

Hi @mmilly
I have been doing a lot of research and I think we will be ok! It seems that it’s really common to feel like crap for a good while after round 1!
I will send you a friend request and I will share the links
X


mmilly
9 months ago

Thanks @joanne46! What’s the phrase-misery needs company? sometimes, I guess it’s just nice knowing that we’re not alone and that it’s normal to feel this way. My MS affects mainly my right arm/hand and for awhile I thought after the infusions, okay, I’m going to feel this crappy for awhile but my arm is actually doing a lot better. Who knows if was actually the Lemtrada or not but I was at least able to use my arm. Now, it’s back to feeling weak and growing weaker right along with me and it’s frustrating. I’m type A and NOT patient…but I have to learn as I really dont have a choice.


joanne46
9 months ago

Please try and be patient…I know it’s soul destroying when you go in wanting to feel better then end up feeling worse…it’s scary…but hopefully the two links I have shared will help reassure you xx

Let me kniw what you think xx


mmilly
9 months ago

Thanks @joanne46. I appreciate you posting these video links. I actually used to watch Matt’s videos and read his blogs so thanks for reminding me of this. The first one really puts it into perspective and was the positive story I needed to hear today-so thank you for that!


joanne46
9 months ago

@mmilly you’re very welcome 😄 we all need to try and spur each other on don’t we so I’m glad I’ve been able to help xx


marcyg921
9 months ago

Lemtrada is a powerful drug that really does change your body and it takes some people longer to regain their strength from it. I’ll give you my experience from Round 1 last year. Now I felt fine after infusion apart from a few side effects and I went back to work later thinking everything was fine, but I was dead wrong. A few weeks later I really felt how much this drug wore me out and I felt rotten. I was limping again, I was depressed, I couldn’t sleep and I felt I made the worst mistake of my life, until about a month later. So about a month later I was going through one of my bad days so I decided to go for a walk and about 30 minutes I realised just how far I had walked and at that moment I knew I was stronger than what I thought so from then on everyday I walked a little bit until eventually, about a month later I was walking to work about 3 times a week, something I hadn’t been able to do in years and I haven’t limped at all since then.

My balance has also been an issue, so much so much so that I can no longer use escalators going down due to the fear of falling but these days I can walk down the stairs without needing much support when at one point I almost need stair aids just to help me get down.

Now my first symptom of MS was a weird feeling in my left hand where at one point I had no feeling in my fingers and at times it would claw up and it would itch so much whenever I even attempted to carry anything with it. Now it hasn’t fully feel, it still feels like a crab is pinching my fingers 24/7 but it is usuable especially when I’m working and it hardly ever itches and it never claws up now.

I still feel tired and I still have quite a mental issues due to MS but they’re no where near as bad or consistant as they were before Lemtrada and hopefully things do improve for you soon, it just takes time.


joanne46
9 months ago

Thank you @marcyg921. It’s so good to hear real life experiences and I’m really really pleased you are seeing some improvements. It’s weird how the recovery period seems to be so up and down…just as you think you are out the woods you’re hit with something else…but it seems that eventually most people get there in the end..you have been a great support. Thank you 😄

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