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    Ocrevus "Crap Gap"

    I just had my second full dose. After my first two "starter" does, after 4 or 5 months, I began to feel really good. I have pretty advanced RRMS. I have bad nerve pain in my hamstrings. After my first full dose, after a few months I also felt realty well until month five when I started to feel badly again. Now that I have had my second full dose, I'm also feeling poorly. I've been reading on some other forums, about an Ocrevus "crap gap": the period it takes for the drug to kick in and the end period when it wares off. This has certainly been my experience, but there is a realty good period in between. I remain hopeful. Have others experienced this?

    #2
    I don't mean to give the impression that Ocrevus has been bad for me. My RRMS has seriously weakened my legs and I have difficulty walking. One of my continuing problems is terrible nerve pain in my legs. Ocrevus, when it works, has given me great relief from this nerve pain and I am able to walk much better. My current problem is that Ocrevus takes a while to become effective and then seems to fade away. During the period of relief, I'm very happy. I just wish it would be 100% of the time instead of 80-80% of the time. I see others have had similar experiences in other places on the web.

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      #3
      No experience with Ocrevus, but on Tysabri, I feel it the week before.

      Is Ocrevus supposed to help with symptom relief? I know Tysabri is supposed to help prevent relapses and slow progression then, but as a bonus, some people experience symptom relief and actually improve. It sounds like that is what you experience with Ocrevus most of the time.

      Here is hoping with time, you get longer periods of symptom relief. I am glad to hear you do get some now.
      Kathy
      DX 01/06, currently on Tysabri

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        #4
        My neurologist suggested that might e possible, though he is always careful not to promise anything. Ocrevus quells inflammation which as I understand it reduces relapses and may help symptoms as well. I'd like it to do both. So far, it has definitely helped with symptoms. looking around the internet (I first camr across the "crap gap" term in a comment at the BARTS MS blog and this led me to some facebook posts there some people observed that Ocrevus took a while to become effective after infusions and "wore out" after five months or so. This has been my experience. I don't like having mobility issues (but I can deal with it) but the nerve pain is really debilitating. So, if I can find relief from I, I'm happy.

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          #5
          [QUOTE=Brad1138;1521814] "wore out" after five months or so."

          I'm not on Ocrevus, but I always read and keep up with all the new drugs. Since your MS appears to be fairly aggressive, have you considered going in every 5 months rather than 6? I thought the recommendation was every "5 to 6 months" for the next infusion. We are all different, with no one treatment being the same for everybody.

          The B cells being killed can be monitored via bloodwork, and perhaps your cells are regenerating quicker than normal. Perhaps you need your Ocrevus sooner? Just a thought... Also, check out the posts by Myoak. His wife made the switch from Tysabri and Ocrevus, and he has a TON of great insights.

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            #6
            Crap Gap

            I have experienced the crap gap. I have been on Ocrevus since a month after it was approved.
            I have had many doses, don't remember how many.
            About a month before my last infusion I started feeling terrible and my leg just got considerably weaker. I received three doses of Solu Medrol and I felt better, leg was stronger.
            This lasted until the steroids wore off. Then my leg went back to being weak and wobbly.
            I had an MRI (different MRI) and there were no new lesions and a few had gotten smaller.
            I got my last dose of Ocrevus and I do feel better (more energy) but the leg weakness seems to be here to stay.
            Neuro thinks Ocrevus is still working based on the MRI results. I asked at my last Ocrevus infusion if people have flares (crap gap) like it wore off; the infusion said that she has seen this happen to several patients.

            I'm not sure if Ocrevus is still working or not. I am getting a second opinion from a MS specialist so hopefully they can provide some insight.

            I always have the thought that my MS is just getting worse and that I am converting to SPMS.
            I look at the new pills that are out for active SPMS.
            The problem with Mayzent to me is while I was on Gilenya my absolute lymph count was dangerously low.
            I think I would have the same issue with Vumerity as Tecfidera caused a low absolute lymph count.
            Mavenclad seems doable and I am ok with the listed side effects. Current Neuro is scared of the side effects.
            While I was on Gilenya and Tecfidera I felt great and didn't have any flares.

            Not sure whats next for me, I was on Tysabri for over 70 doses, no flare ups or new lesions.
            JC+ ended it for me.

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              #7
              pballer76

              Many JC+ Tysabri users are remaining on this highly effective drug by extending their infusions to 6-8 weeks. This reduces the risk of PML up to 94%. Just a thought.

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                #8
                It's back! the Gap. I have a bit more than one month until my next scheduled infusion (end of August). The last few weeks I feel as if my condition has deteriorated. Now the wait begins. Then the month afterwards to adjust. But at least I'll have a few good months. Wish me luck.

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                  #9
                  Talk to your neurologist about increasing the frequency of your infusions to quarterly or every 5 months.

                  I wish you well...

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