Hi I’m new to this page just found it and it so nice to finally be able to speak to people that’s all going through the same thing as me even though family tried to understand it’s not the same two years ago I was diagnosed with primary progressive MS two years prior I kept being misdiagnosed which led to me now not having very much mobility due to be diagnosed late they put me on a medication called ocrelizumab (Ocrevus) with only stared 6 months ago and due it this month again as it every 6 months you have it they said I have to give it a chance to work but I feel that my symptoms like heaviness tightness spasms and drop foot have all got worse. Is anyone else on that medication? How do you find it? X
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Hey Roxanne,
I know how you feel being diagnosed with primary progressive MS as well. Recently started Ocrevus in December. Have not had much difference as think I’m still in that time to give it a chance. Hope you don’t have any reactions when you have the infusion, thankfully only had a quick hot flush first time but that it so far for me. Hope it helps you out as losing mobility has been the worst part for me so far needing to use double crutches.
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Worth taking a look at FES as a solution to drop foot. Your GP can refer you for assessment.
I don’t get any reactions thankfully yeah I use crutches and also wheelchair but it’s just the drop foot got worse as well as the heaviness. I don’t know if that ever goes hopefully it’s will help with the symptoms do you also get like really cold feet as well mine is so bad They are cold all the time can never get them warm😂 how are you coping with it all mentally
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Mentally was a bit of a dark patch but with my aunt who also has MS has been a font of knowledge for me and she knows how I’ve been feeling.
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Hi @roxannespragg921
Welcome. I’m on Kesimpta (Ofatumumab) inject once a month, and from what I’ve heard, Ocrevus (Ocrelizumab) is basically the same drug --both are [CD20].
Tbf I’ve only recently started on this DMT so it would be sensible for me to be patient and wait and see how effective it is.
So far, I’ve only noted positives with this DMD such as, getting rid of my constant back pain.
Fingers X, with time I’ll feel a lot better this year and more mobile than last year.
Best regards,
JP
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My neurologist has referred me to them for it still waiting to hear back
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I hope it continues to work and help you
What are your Ms symptoms if you don’t mind me asking, I know I’m got to give the medicine time but I don’t see no benefit if anything I’ve notice more symptoms and I’ve been put on more medication, so not too sure if it is a agree with me only positive thing the last MRI had there hasn’t been any more lesions and the swelling has gone so I’m not sure as to why my symptoms have got worse who knows
My understanding is that DMT’s only help to prevent relapses and do nothing to stop symptoms.
Treatments available for symptoms.
This should explain why your symptoms are getting worse.
Getting worse - by Gavin Giovannoni - MS-Selfie (substack.com)
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Thank you
Hi again @roxannespragg921
My symptoms are likely to be the same or similar to yours: we MSers usually share the common multiple sclerosis symptoms when initially being diagnosed imho.
To you have any tips also does it affect your muscles in the legs as I’m in a bad way they feel like the muscles are tearing and keep making my legs give out
Hi Roxanne and welcome to the group. I have rrms or ppms, my consultant isn’t sure which one I have. I am also on ocrevus every 6 months, i am under the impression it slows ms down it doesn’t stop your symptoms. I could be wrong though. I have just had my 3rd dose of it, I would say it makes me feel better within myself really. I have rightside weakness and footdrop. I think the cold weather makes my symptoms feel worse, hand and leg stiffen. Take care, Angie 
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Personally, I find painkillers help a bit, as they are anti-imflamatory; plus physiotherapy exercises also help.
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