• Carolyn posted an update 1 month, 2 weeks ago

    I started Ocrevus on Jan 16th and 30th. I now have to have MRI’s 3 months after the infusions.
    Yes, I said 3 MRI with and without the gadolinium contrast. If it’s 20 mins for without and then 20 mins with the contrast, times the 3 MRI’s,…that’s 2 hours in the MRI tube! I don’t think I can do that at all, even with sedation. I would be more comfortable doing them one at a time spread out over time. I know there’s concern about having repeated Gadolinium being retained in the brain. I also don’t want any renal damage. Any ideas out there??? Many thanks for any thoughts or observations.
    They are offering me some oral sedation but I don’t think I can do it.

    • Carolyn,

      My personal experience is that a brain MRI without contrast usually takes about 20 minutes but the one that follows, with contrast, only takes about 5. As for the contrast itself, here’s info from the draft of a book that I’m writing:

      “In patients with normal kidney function, ninety percent of the gadolinium is passed out in the urine within 24 hours. But in December 2017 the U.S. Food and Drug Administration updated a Safety Communication to say that some people who’ve been injected with gadolinium many times over the years may retain some gadolinium in their brains. According to the FDA, there is no indication that these deposits are harmful, though some patients believe otherwise.

      The FDA advises healthcare professionals and patients to avoid unnecessary use of gadolinium contrast agents and the Consortium of Multiple Sclerosis Centers, which represents MS healthcare specialists in the US and Europe, recommends that it be used judicially. CMSC guidelines say the use of contrast is important for diagnosis and ongoing monitoring of MS in certain situations. However, they say, for routine ongoing MS monitoring gadolinium may not always be needed.”

      I think that monitoring the affects of your Ocrevus falls in to the category of “ongoing monitoring.”

      Ed

      • Hi Carolyn

        Thanks for putting this up.

        I’m on Ocrevus myself – have had a couple MRI’S in the last few months!
        I know there is controversy about gadolinium – though I’ve never been bothered enough to investigate. I reckon the DMT’s are so damaging that the contrast is a sort of light relief!

        It seems sensible if you are worried to do it all in one go.

        Afraid don’t understand why you’re worried about renal damage – reasonably sure MRI’s don’t have that effect.

        I’m so used to MRI’S now I usually fall asleep!

        The only problem is the operators then panic and shout at me.

        Presume they think for anybody to be that relaxed in their ‘infernal machine’ they must be dead!!!

        Cheers John

          • Thanks, John, for your reply. I’ve never been able to fall asleep in one of these monstrosities. The sedation they’re offering me is 10 mg Valium by mouth. It sounds like it would be enough to put me to sleep! Ten mg for sleep the night before, Then 10 mg one hr. before the MRI, and if I need it through the rest of the test, not to go over 4 tabs, which includes the one the night before. So, quite sedating. I just don’t want to wake up in a panic and move. I haven’t heard of any kidney damage but everything has to get filtered somewhere! Just thinking that it’s such a long time. Perhaps I should call Univ. of Penn and ask them their with and without time. Hmm. Maybe that would be a good first step!
            Thanks Carolyn
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