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  • Steve Slobodzian posted an update 6 days, 7 hours ago

    I was just reading the new, supposedly improved guidelines, Canada has imposed on PPMS patients. In particular it seems with their ongoing reluctance to administer Ocrevus, now to people over the age of 55. Roche originally were going to not recommend Ocrevus for the over 55 patients, but changed their mind. I am currently 67 and have been on Ocrevus since approved. I am wheelchair bound and convinced I would be bedridden now without Ocrevus. It alleviates pain in feet and legs, gives strength in legs to transfer etc. I am able to sweat again giving me the ability to tolerate heat better which means no more cold showers and the ability to be outside and interact with family and friends. It has calmed my shaky hands also so I can write legibly again. Canada again is discriminating because of age for some reason. Why ?

    • I’m in the UK and was on Ocrevus but pulled from it in December because it was decimating my immune system https://multiplesclerosisnewstoday.com/columns/2019/12/11/stop-in-the-name-of-leukocytes/. Obviously before Covid! Surely if it increases the risk of contracting COVID-19 this needs to be balanced against how helpful it is to you. The final decision should be one taken between you and you’re neurologist rather than one imposed on you by the government.
      • I found out the hard way about Ocrevus and immune system. A couple of years ago I contracted an infection that landed me in the hospital for 2 days hooked to IV of anti-biotics. It killed the infection and they never identified what is was. Since then I self imposed indoors for two weeks after infusion and have not had a problem since. I had an infusion in March and expect my next one in Sept. An Italian study claims that you get improved immunity to Covid-19 virus on Ocrevus. I am very happy with my progress so far and don`t want my progress to suffer either.
        • Hi Steve,

          Thanks for your comments. I’m concerned about guidelines that place an age ceiling on a treatment. I’ve been treated with Lemtrada. It’s helped slow progression and improve some symptoms, a bit. I began those treatments in Dec., 2016 when I was 69!

          BTW, the Lemtrada protocol requires that, before and after each series of infusions, the patient use an anti-viral to try to attempt an infection…in this case the virus that causes shingles.

          • I was reading about how proud Canada is in treating immigrants with MS. And with the health care system they are treated for free. How is it then that citizens of Canada, over the age of 55, and have PPMS are denied Ocrevus ? This drug very well over the long run could save Canada money. If PPMS patients are refused a drug that could delay or even stop progression of MS, that could keep them out of a permanent bed and thus long term care.
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