Last reply 4 days ago
Lemtrada and Ocrevus – for RMS

Hi All
Just wondering if anyone has taken lemtrada and post 20 months ( 2016 first infusion) after the first infusion your neurologist suggest you to take Ocrevus. As most of you who have taken lemtrada as time passes my walking deteriorated. I can just get around still drive but very minimal movement. I also had issues with my thyroid and fast forward to April this year I had to remove my thyroid completely. I saw my neurologist yesterday and he suggested another shot of lemtrada but I refused too and then he suggested Ocrevus. My walking has deteriorated even more from removing my thyroid. I go for a MRI this week and wait for the results. No matter what the results state he still wants to go through with ocrevus. I was diagnosed in 2013 and haven’t had any attacks or new leisions. Last years mri stated my lesions were decreasing in size, which was awesome. I am so confused as I thought what I am experiencing is the recovery of lemtrada and as time passes it may improve, well fingers cross. Has Anyone taken ocrevus who has been on lemtrada??? Don’t know what to do. Prior to lemtrada I was so fit moving around running.. this last year has been a nightmare and I am too afraid to take anything.

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seanachai
1 month ago

Suggest you consider a new Neuro if financially possible…

Failing that ask why is Ocrevus any different than Rituxan and if not (not proven), why offer you a 20 yr old therapy…

BTW if Lemtrada has not worked, why are you not looking at HSCT ?


anonymous
1 month ago

@seanachi
I live in Australia and joined this group to see if I can get some info on Ocrevus and people who are on it. This drug has just been approved in Australia. From what I gather anyone who has had side effects from lemtrada they r offering Ocrevus. I am worried if I do consider taking this drug, is my walking going to deteriorate even more, putting me in a wheelchair. Yes HSTC is an option but not right at this moment in my life as I will need to go to Russia for treatment.


tracyd
1 month ago

The thyroid has nailed me with my energy levels and it’s meant I’m not doing as much as I would like to these days.
I’m NEDA for MS, and that’s awesome for me.
If I had new activity I would absolutely have another round of Lem and I would actively avoid Ocrevus based upon the stats for heart problems I’ve seen. When I talked to my Neuro about it they were quite anti round 3 (cost) but agreed with my logic for not wanting Ocrevus, for active disease I would probably go the HSCT route now or off book cladidrabine (Mavenclad is simply a very expensive, slightly less effective tablet form of something that is a retasked treatment thats as cheap as chips)
Russia is where someone I know went for HSCT and she absolutely raves about it and the positive outcome she’s had from it. Mexico is the other location I’ve heard positive results from. NHS UK – I would run from unless it was in a specialist facility away from a ‘hospital ward type environment – the rates for septisemia (sp?) are shockingly poor here


anonymous
4 weeks ago

@tracyd

Thanks for the info. I hope I don’t have any new lesions or activity shown in my mri on Monday.if all is good I will not be taking anything and hope I will see change as time goes with my walking and spasticity


reds44
4 days ago

I did Lemtrada in 2015,2016 my walking also declined. I told my Nero a few months back I could feel myself progressing, So started Ocrevus in July. I have not had lesions in over 5years but that does not mean I am not progressing. I will get my 1st full does in Dec. my walking has stayed the same rollator 24/7.

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