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Thread: Ocrevus Check-In

  1. #11
    Distinguished Community Member BBS1951's Avatar
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    I have had @20 IVIG infusions and agree with what Rose says :)

    And better they infuse on the slow side than too fast re side effects

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  3. #12
    Distinguished Community Member Jen's Solitude's Avatar
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    Hi Again, Well things look good. I read all the replies and I hope I remembered all the suggestions given. As of now I am registered into the hospital for Friday at 10:00 instead of tomorrow. The follow up will be on the 30th of October.

    I will be in the Ed-Observation section of the hospital and they will be providing me with the same meals the other patients receive. He said every room has a chair along with the bed. It will also have an Internet connection.

    Seems like it will be okay. Glad I called because they do need time to set up the special arrangements. I'm feeling much better about this now so thank you all so much for your help!
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  5. #13
    Distinguished Community Member agate's Avatar
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    We'd like to know how it goes if you'd like to tell us. This is such an important new medicine, or at least it's had a lot of publicity, that everyone wants to know more about what it's like to take it.

    In other words, some of us here are letting others find out for us so we don't have to be the guinea pigs, and if you don't mind cluing us in, we'd be interested.

    Thanking us? Many of us here should thank YOU for the years you spent always being supportive on this board!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Dar)))))) ~

    I'm so glad that you called and now have confidence that you'll be in a bed, with a comfy chair for your husband and food provided to you. It sounds like the hospital takes good care of their infusion patients.

    Praying that all goes very well for you, with no side effects and excellent results ~

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.


  8. #15
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    Sounds like you've straightened out some logistics and you sound more relaxed. Yay.
    Here's to it stopping the progression for us all.
    Be the person your dog thinks you are


  9. #16
    Distinguished Community Member BBS1951's Avatar
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    We all have each other's backs here at BT!

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  11. #17
    Distinguished Community Member jendie's Avatar
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    My best to you, DAR!

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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  13. #18
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    Thinking about you and sending positive Qi. Xkxox

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  15. #19
    Distinguished Community Member Jen's Solitude's Avatar
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    Hey Folks, I can't believe it has taken me this long to get online so that I could update you guys.

    First let me say the actual injection went very well! I didn't have any bad effects except for the Benadryl which made me both tired and dizzy. As for the possible symptoms I was warned about from the literature provided and from the nurse, nothing manifested itself.

    They expected my bp to drop which it did down to 148/???. The lowest it had been in years. I started off at 160. The nurse said they just didn't want it to drop too low too fast which has happened for some but didn't happen to me. When I first got to the unit they gave me 3 injections into my IV line. One was solumedrol and one was Benadryl but I can't remember what the other one was. I was also given 2 pills to take, I think one was Bayer aspirin but can't remember the other one.

    My biggest problem was with my bladder. Every hour to hour and a half I had to bother the nurse to use the bathroom. It bothered me a little before the infusion but I guess with the stress of getting to the infusion center my bladder just decided too much was happening. They hang the IV to a big pole and I was also using my rollator. By the end of the day I figured out how to maneuver both so on Oct. 30th I will just move it on my own if they allow it. Of course I am hoping my bladder problem will resolve by then as well.

    So like I said the infusion went well but since that time I have been feeling so strange and out of it. My right leg which has sustained the most damage since my attack back in 2015 is really hurting. I normally take one Lyrica at night but had to use 3 yesterday just to endure the pain. So far today I have only used one and I am hoping that means my nerve pain is dying down.

    Along with the pain I have had this strange disorienting feeling. My normal sleeping pattern has been disrupted and I had very little energy until today. I was just resting since I got home Friday. Only doing what absolutely had to be done. I am wondering if this is due to the stress or if it is due to the Icrevos. I need to find some info about exactly how Ocrevus effects the body. Maybe the way I feel is one of the more obscure side effects?

    Yesterday, it felt like my sugar was too low. I ended up getting one of Curt's sodas and it seemed to help. I actually felt "shaky" a few times since the infusion like I needed to eat more and drink something besides water.

    Just walking was difficult and I thought I needed to use my wheel chair so that I didn't fall. But yesterday afternoon after I ate dinner I began to feel more in control of my balance and footing. Today I am walking slowly but now as slowly as the last few days.

    There is more to tell which I will get to eventually, but I think I covered the main things. Of course any questions you guys have will spark my memory so ask away if I didn't cover anything you were interested in knowing.

    As for the time spent at the infusion center, it was longer than expected because of an attendant who took me to the wrong place initially. She meant well but she totally exhausted me with the needless walking from one place to another. The first thing I decided was that I would be arriving in one of their many wheelchairs sitting outside as soon as we pull up. The nurse brought me to the car once the infusion ended. That was very helpful.

    The infusion was to start at 10:00 but with the mistake of the attendant and with the fact that the Ocrevus cannot be ordered until I arrived . . . it was about 11:15 or so before the infusion actually began. The last thing they do is a "rinse" which is just regular stuff after solumedrol (sorry I just forgot the name) I had to wait for about an hour for the saline solution (?) to run through me. So we were released around 4:30 I believe.

    Being so tired and dizzy I didn't do anything but lay there resting. They provided lunch at close to 1:30 which is about the time I eat here at home if I am feeling okay. I didn't have any snacks or anything because I wasn't hungry. I drink water but with my bladder problem I only drank one bottle while I was being infused.

    Okay getting a little tired now so let me post this and rest my eyes for a few minutes. I will be checking back though as often as I'm able.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  17. #20
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    Dar, glad it went as well as it did, though it does sound as though you were in some discomfort with the bladder problem. I am wondering why they gave you solumedrol. I didn't know they did that. I guess it is to make sure you do not have an allergic reaction to it, but then they gave you Benadryl.

    I wonder if your bladder problem was worse because of all the liquid that was going into you. Sounds like you had quite a bit flowing in.

    I hope the other problems disappear on their own. It was my understanding that after the infusion there were no side effects with this drug, however what they tell you and what really happens can certainly be two different things.

    Please keep us informed. Others will be along and will have some input into what could be happening with you.
    Virginia

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