Forums


Treatment

Starting use of Ocrevus in a month.

  • By Mike

    Was diagnosed with MS in 2005, I used Rebif for first 5-6 years, GI system finally fell apart and symptoms were tough. Then using Aubagio and really liked, but now almost 12 years, head pain and right leg pain and starting to loose function and use of right leg. The past 6 months have really been tough physically and mentally. Doctor is suggesting Ocrevus. What does this involve and what are expected systems?

    Reply Created with Sketch. reply
  • By Erin Rush Moderator

    HI Mike! I am sorry that Aubagio is no longer working well for you. I know that must be frustrating. As far as Ocrevus, I know a few of our members are now trying it and maybe they will be able to share some input. Here is some information on the potential side effects of Ocrevus — https://multiplesclerosis.net/treatment/ocrevus-how-well-works-side-effects/. Here is one person’s experience with Ocrevus — https://multiplesclerosis.net/living-with-ms/ocrevus-patients-story/. I sincerely hope this medication works well for you, but I would be remiss to not share another side of the Ocrevus story, which you can read here — https://multiplesclerosis.net/living-with-ms/ocrevus-clinic-issues-cautionary-statement/. Like many MS treatments, it can have some pretty serious side effects. But, you are not new to MS and already know this. Only you can decide whether this is a treatment option worth pursuing. Best of luck and please feel free to come back and update us on your decision, if you feel comfortable doing so. Best, Erin, MultipleSclerosis.net Team Member.

    Reply Created with Sketch. reply
  • By Spratt

    I start Ocrevus in a week or two as well. Do your research, then discuss it with your doctor. I like that not only did she strongly suggest I do my own research, she also research and discussed it with me before we made the decision. Good luck to you!

    Reply Created with Sketch. reply
  • By Primrose68

    I have had my first Infusion of Ocrevus ( a week ago) at B & W MS Clinic. No reactions, very comfortable in the reclining, massaging, and heated Infusion Chair-they brought me coffee-fantastic, and, were very sure I knew what to expect .
    I cheerfully arrived home to greet Trick and Treaters- only to have a HUGE bounce that knocked me for a loop-so tired ! WOW. Got into bed-tried to sleep-then at 11 pm I was WIDE AWAKE until 4am ~! Needless to say-I was exhausted for the next 5 days ( Such is this lovely disease !! ) Second Infusion next Tuesday-hope the bump down won’t be as drastic-but-with the pre-infusion Benadryl, then steroids -who knows ~! I gather it can take 4 months before you notice anything-if you are going too.

    Reply Created with Sketch. reply
  • By djharborth

    Hi All
    I am new here and new to MS ….I was diagnosed with CIS a year ago After the birth of our second daughter.
    In September my doctor found one new lesion and decided that the Copaxone didn’t work for me and suggested a new drug Ocrevues bc my clinical diagnosis is now RRMS.
    My first infusion is today at 1 o’clock I wil update accordingly.
    My path to an MS diagnosis ……
    In May of 2016 Started having floaters in my right eye and a week later had a giant white spot in my eye.
    Wwnt to NEUROLOGIST had MRI and spinal tap… then Optic Nero
    Both recommended I go to an MS specialist…
    September 2016 I went to see Dr.Dunham at Baylor College medicine MS Clinic.
    Diagnosis of CIS and started copaxone.
    After talking with him it is clear that what had always been the norm for me is not normal ….but seriously my symptoms are so vague and inconsistent..
    numbnesss
    Tingling
    I fell several times after the birth of our second child …my leg just gave out… and still I thought it was nothing…
    And fatigue my biggest complaint…but I am a Mom …..so I feel like it’s the norm.
    Hopeful and excited for this new option.

    Reply Created with Sketch. reply
  • By trinettegn69

    I was diagnosed in September and started my Ocrevus infusionand it was given in a moderation of two weeks intervals..I am still experiencing the pain in my legs, head and eyes… hopefully after my next dosage I will notice a difference… I can truly say that my first treatment I had an allergic reaction and they had given me benedryll by IV prior to a benedryl and steroid before receiving my infusion… my face had whelps and we had to stop the infusion for about an hour and finally completed it. I felt drowsy afterwards when u arrived home.. the next day I went to work and had no problem but the second day after treatment around 3 that evening felt like u had been hit by a bus or been badly beaten… however, on my second dosage it was completely opposite… I was able to complete the infusion without any benedryll through my IV and no allergic reaction and completed treatment in a timely matter but my blood pressure was constantly rising and falling because of my impatience of not wanting to be there and having s hard time accepting the fact that MS happened to me. I had no pain, fever or any reaction from the infusion after my second dose. I did have a lot of energy and I started walking, and felt like I was getting back to myself but MS quickly reminded me that it is still there.

    Reply Created with Sketch. reply