Last reply 5 months ago
After lemtrada

Hi all,

I am just over a week post round 1 and feel like I’m almost worse than I’ve ever been. I relapsed with a major balance and motor relapse in January and was on steroids nearly constantly for 3 weeks before lemtrada. Other than that I’ve had so many relapses since I was diagnosed in Jan 2017 I cant tell when one began and another ended.

Now I feel like my bottom half is a dead weight. My day is getting up and dressed, 20 mins to get downstairs to sofa, only getting up to the loo then back to bed. I can only walk with walls/furniture/other support. Days when I have a bath, my muscles are usually so tired that my husband has to lift my legs up each step to go to bed and that’s usually 6 hours later. It’s awful.

I know I’m to expect the first few weeks are the worst but I have no home help or adaptations as the hard v affecting mobility happened so close to lemtrada, my husband and family have been working to look after me, so i just wonder how long it took people to improve/feel changes etc? Is it to do with the fact I had a bad relapse so close to the treatment? And that I had so many before treatment?

Anyone else’s experiences would be helpful 🙂

Thanks
Beth

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marcyg921
6 months ago

Hi, Sorry to hear this and I know what you’re going through but the best thing you can do right now is rest. After I finished Round 1 of Lemtrada I was exhausted, my symptoms flared up and I was a mess mentally. It did take some time but after a while I started to feel better than I had in years, I was walking to work, something I hadn’t done in years, my left hand which I had so much trouble was getting much better and much stronger and it stopped itching whenever I used it and mentally I was calming down.
Now I’ve recently just finished Round 2 and so far no relapses and things are going well but I do have bad days but its important for us to look after ourselves especially when we have them. It will get better for you but just remembber your body has been through alot and you can’t rush the recovery of it, it’ll heal up when it can but for now its screaming that it needs more rest and since you’ve recently had a relapse and had quite a few in the past, it may just take you longer to recover.
I hope things pick up for you soon. Lemtrada is a long road but its definitely worth it.


bethyannelies
6 months ago

Thank you. How long after did take for you to begin feeling better? Mentally I’ve always been quite stable with my symptoms but I’m very down at the moment and finding it very hard. Lots of tears. Ive now developed real weakness in my muscles as a side effect which doesnt help as it is a symptom too. It’s just all so hard at the moment.


marcyg921
6 months ago

It did take some time and I’m talking about 3 months for me to really start feeling the improvements and to start feeling good about myself again. I know it seems like a long time but don’t base your recovery time off of mine because everyone recovers at their own pace and who knows, you may feel better tomorrow. Just take it one day at a time and listen to your body and eventually you’ll start to feel better.


wjgregg
6 months ago

I’m glad there are some positive stories out there, for people in your position. I hope, just like marcyg921, we’ll be hearing better news from you in the weeks and months to come.

Take care of yourself, and best wishes.

Jon


reds44
6 months ago

I do hope you start feeling better I am a year and 2 months post round 2 and my legs got worse after round 1. It has happened to a lot of us on here I am happy for the one’s it has helped. Good luck to you and I do hope you become one of the lucky one’s.


lisaneighbour
6 months ago

Hi Beth

I’m so sorry to hear this. I have been wondering how you are doing.
Did you complete your other treatment pre lemtrada?
I am just starting week 2 and it’s completely wiping me out. I was also relapsing before starting the treatment.
My team are still questioning if I will be able to tolerate the lemtrada and current medication at the same time. I must admit reading how people really struggle post lemtrada I’m apprehensive.
Hope things improve for you Beth
Take care
Lisa
X


bethyannelies
6 months ago

Hi Lisa,

No I didn’t, I started lemtrada after four weeks of the TB meds, and had steroids for just under 3 weeks before too because of the relapse.

I don’t think the TB meds have affected lemtrada at all, although the first week or so of steroids with them wasnt great, just made me feel a spacey as hell. I know my team checked on all contraindications for all the meds they gave me with the TB meds. Good thing that the steroids they gave during lemtrada was different so I felt ok with them!

I dont regret having it when i did, I just wish the TB thing didn’t delay it to the point of my last relapse. I really think if I could have had it before my last relapse then my recovery wouldn’t be this difficult. It’s exacerbated everything bad about the last relapse.

Please let me know how you get on and what they decide 🙂
Beth


lisaneighbour
6 months ago

Hi Beth

Thank you
I still haven’t got the hang of this yet.
I’m week 2 of TB Meds it’s 2 antibiotics in one dose plus vit B6 to prevent nerve damage (ironically). Is this what you had?
I am getting more strength back in my MS leg and MS symptoms are improving slowly with rest. However I feel completely wiped out in the afternoons, which is really dibilitating like MS fatigue with a dose of flu. I think this is the treatment not my MS. Do you think any of your symptoms were exacerbated by the treatment?
Would you mind if I asked what trust are you under? I really wanted to mention your circumstances, with your permission. We are both going through such a similar situation. MS team are still discussing my treatment with drug companies and no dates or plans are in place.

Happy if you want to message me, I’m not sure if if ive mastered that yet.
I’m so sorry for all the questions, its so nice to let it out. I really hope you are starting to improve and see the benifits of Lemtrada.

Lisa
X


bethyannelies
6 months ago

Hiya,
Weirdly, I was completely wiped out in the afternoons too and thought it was a combination of the TB meds and steroids. It has got better though.
Yeah, I’m on the same ones. My team didn’t take too long to see if they could all be taken together…
I will PM you the rest of the info 🙂
Beth x


bowiekat12
5 months ago

Hi Beth.
I hope things are improving for you.
Reading your post has given me so much reassurance. I am 4 days after finishing round 1 of Lemtrada and I’m exhausted. I seemed to cope fairly well with the actual treatment. Apart from the rash which comes and goes I haven’t had any major side effects. That said, I’ve got return of all my ms symptoms and and more. I relapsed in March with optic neuritis and this has worsened considerably at the minute with blurred vision, headache and tingling over my scalp. I’m exhausted which is a shock to my system as I luckily don’t suffer with the fatigue too much normally. My legs just feel like they won’t support me. I could burst into tears most of the time. Amongst other things. My neurologist and ms nurse have been very reassuring, it’s just somehow more so from others who have actually been through it.
I’m hoping that the benefits far outweigh of all this once things improve and am reassured by others comments on this and other threads.
Best wishes
Katey

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