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Hi There,

I realized I posted my message in the wrony thread related to LDN so I’m reposting it here. Does anyone have any experience with Ocrevus (also known as Rituxan)? My neurologist suggested it to me today as a highly successful treatment, but even though it's not supposed to cause any immediate side effects, it carries some risks down the road. The doctor's approach is that we need to live a good life now, and not worry if there is some increased chance of developing cancer decades from now.

I was diagnosed in June, 2015, had only one massive attack then, and although it took me a year to get rid of all symptoms it all went away, Shortly after the diagnosis, in August I started Avonex and took it for 3 years. I was doing so well, that even some of my lesions disappeared and in June 2018 my neurologist took me off of Avonex because he said there was no medical reason to continue and it was causing awful side effects. Copaxon is not an option for me because I hate needles. As I stopped Avonex my neurologist said that my case was benign and he didn't think I would have another flare and if I did it would be a mild sensory one. 4 years went by sine my last attack and 1 year since stopping Avonex, and 2 weeks ago I went through an enormous stress and as a result my left hand went numb. The MRI showed 2 new enhancing lesions, everything else is stable.

I don't know what to do. I'm really not too happy about starting a new drug. I take LDN (4.5) and 20K Vit D everyday and don't have any symptoms except of the flare in my hand, which is doing better. Of course right now I'm going through a steroid IV treatment followed by oral Prednisone.

Forgot to add that I’ve been a devoted follower of OMS since 2016. Because I live in the US I’ve also been GF. I reintroduced gluten last August and I wonder if in combination with my stressful situation it contributed to this flare. Just in case I cut our gluten again - in the US it is considered a highly inflammatory food because of GMO and heavy use of Roundup on the crops.
All these years I’ve also been doing intermittent fasting which helped me a lot.

Is anyone else taking Ocrevus? I would greatly appreciate any input.

Thank you,
Tedi
Hi Tedi,

Am sorry to hear you have had a flare up with your wrist and I am not taking Ocrevus however from what you say you are doing really well and the OMS programme is helping you massively. I actually experienced dreadful tingling in my hands arms and shoulders a few years ago and neuro advised MS relapse..drugs ..but I knew in myself it was from mountain biking, trapping nerves in my shoulder and declined the drug option. However it took a long time to find a therapist to work with my fascia and muscles which relieved the tingling....problem is it took 2 years and noone believed me ( even my hubby began to doubt) which caused me stress which caused my Ataxia balance issue to get worse and still exists! so I guess what I'm saying is I really suggest you work on meditation and calming strategies. Stress is definately a negative for us MS'ers. I am also gluten free and know my balance has improved over the last few months since avoiding gluten. I would recommend you get back to reducing gluten as you mention you were doing well before.
I hope this helps and good luck. Its your choice at the end of the day :)
Anita
Thank you so much Anita for your reply and support. I also believe that managing stress is very important. Lately I started biofeedback, hope it helps. I will try to meditate more, it's always very helpful. My naturopath told me that organic wheat is OK because it wasn't treated with Roundup, so I might give it a try and see if there is a reaction to it.
Wishing you great health!
Best,
Tedi
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