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Rainy Day, Flat Tire, Hives & still worth it!

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    Rainy Day, Flat Tire, Hives & still worth it!

    After such a burdensome process with insurance, my first infusion was scheduled. We drove 7 hours in pouring rain, so my husband and I were both tense when we got to Cleveland Thursday night. To make matters even better, my husband was packing bags into the hotel from the car and noticed we had a flat tire! I canít even make this stuff up! Itís funny now!!

    He changed the tire in the hotel parking lot (in the rainó YUCK!) while I sat on the bed! We got to the infusion center Friday morning and we had a little bit of a wait because we were early. I got seated in a nice little recliner that sat in a row, across from another row of recliners. There were five others getting infusions and they all got Ocrevus, except for one man who got Rituxan. I was the only one who was getting the initial first dose. Another lady was getting her second half of the first dose and the others were getting their six month dose.

    The nurses were so calm and that helped a ton. I was nervous! They put the IV in, then gave oral meds which consisted of Tylenol and Benadryl. They also gave a small dose of Solu-Medrol by IV. Then they let our ďspouses/drivers/visitorsĒ come in. There was a wait of about an hour for the Ocrevus to come up from the pharmacy. When it arrived, they were very efficient getting it started quickly for everyone. About two minutes after it started I got so flushed and sat up quickly. I asked the nurse if the medicine would make me hot, but she assured me that I hadnít even had time to get any of the medicine yet and just to try to relax. I realized I was just having a small moment of panic and when I sat back and breathed it was all good.

    They checked vitals every 30 minutes and recorded those. My BP and temp were great the whole way through. My lip and tongue started tingling but I wasnít sure if I should say something or not, wondering if this was anxiety again or a side effect. I went ahead and told a nurse but no one was super concerned and it wasnít bad enough to stop the meds.

    After they increased the Ocrevus the final time, I noticed my face was itching and said something to my husband who pointed out that I was ďbreaking out,Ē so I asked him to let a nurse know. By the time the nurse arrived, I had hives all over my face, neck and chest. They were so quick to deal with this! They stopped the Ocrevus and administered IV Benadryl, Pepcid and something else I canít remember 😬. Once it took effect the hives disappeared, then they waited a bit and started Ocrevus again. Other than being loopy and super sleepy from all the Benadryl, I was fine!

    FWIW, I didnít notice that anyone else had any issues with the medicine. All in all it went well. I havenít noticed any major differences yet, but itís only been 36 hours! I was very tired when I got back to the hotel. We were going to go out for dinner, but I didnít feel like getting ready and going out so we ordered pizza delivery instead! We had a much better drive home today, and Iím so thankful that I got to get this medicine.

    Even though I feel like I complain all the time since diagnosed, I know how fortunate I am. Hives are super easy to deal with and seem like an easy trade for a treatment that I feel is the right one for me.

    Just wanted to share my first experience with a DMT, which happened to be Ocrevus, as well as the rest of our odd trip! It was certainly one for the books!
    DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

    "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
    - 2 Corinthians 4:16

    #2
    Hi smalltowngirl,

    I'm glad everything went well for you! I have to say, you are funny in your writing. I laughed a few times. I hope you have some good results from the Ocrevus. I was reading some things on it, and I saw that the largest proportion of people who have a reaction like you did do so on the first half dose, and then then numbers fall dramatically. I'm glad they were able to deal with your hives so quickly and effectively! All the best.

    Comment


      #3
      PositiveMS,

      Thank you!! Yes, I read that too, and that definitely provides some comfort knowing that.
      DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

      "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
      - 2 Corinthians 4:16

      Comment


        #4
        Hi smalltowngirl,
        I wish you well on your Ocrevus journey!
        Linda

        Comment


          #5
          OMGoodness You sure had a lot to happen getting there and then having a reaction, that was definitely to much.

          I'm glad it all worked out and you were able to get your treatment.
          God Bless Us All

          Comment


            #6
            lindaincolorado and REG53,

            Thank you both!!
            DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

            "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
            - 2 Corinthians 4:16

            Comment


              #7
              Thanks

              Thanks for sharing.

              Comment


                #8
                I needed your post - Thank you!!

                I loved every single word and especially the humor! Humor is one of the things I appreciate most right now.

                i had my first Ocrevus yesterday...nothing like your tire and rain debacle getting there .
                i too sat up with a huge surge & my nurses (vanderbilt ms clinic) were such pros and so very calm.

                i also got hives (back and sides and then lower abdomen) - itchy and yeah I wasnít beautifully calm. Husband was very helpful - calmly let the nurses know & I kept a small lid on my crazy bc there were others being infused as well.

                i asked the sweet nurses repetitively if I was going to die - probably 20 times - they were just such pros and so amazing -

                Paused The Ocrevus & then benedryl did its magic, hives gone...back on the O & then home after sleeping thru the observation

                No one else in the room had the issues I did so reading your post was very very helpful. I would love to hear how your second dose went if youíd be willing to share?
                just thank you...

                Comment


                  #9
                  Spacecake,

                  I am SO glad you found it helpful. I, too, sought help in this forum when I was diagnosed and started Ocrevus soon after.

                  I had my first full dose on August 30. It was actually at my 5 month mark, instead of the originally scheduled 6 month markó this was to accommodate my work schedule, so I was super grateful for that!

                  I still get really run down after the infusions. This last one wasnít nearly as bad as either of the half doses though! I just went ahead and planned childcare and time off work to cover 4-5 days since I anticipated being nauseated and dizzy like last time. I spent that time in bed with Netflix!

                  One thing I will say that Iíve noticed about Ocrevus is that it has caused skin infections and crazy slow healing times for me. I got a mosquito bite (or something??) on my face several weeks ago and a red spot is still there. I got a bump of some kind (never had before) on my abdomen and it turned into a skin infection that required Rocephin antibiotic shots. Iíve had a teeny tiny cut just barely on the inside of my nose that had been there since May. I knew skin infections were a risk with this med so I canít say itís a huge shock, but itís definitely a bummer!

                  I hope to read more about your journey and Iím so happy you responded to my post. Take care!!
                  DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                  "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                  - 2 Corinthians 4:16

                  Comment


                    #10
                    Yes it helped me too when I was deciding, I appreciated the humor in your post despite the challenges you were facing, you guys were determined and you got quite a story out of it!

                    Hope the infections are minimal for you. Iím traveling to Asia this week and am just a bit nervous, noticed my throat was a little scratchy this morning so now Iím going to be paranoid about it

                    Anyway hope it has been otherwise well tolerated for you!

                    Take care

                    Comment


                      #11
                      Originally posted by MisterMan View Post
                      Yes it helped me too when I was deciding, I appreciated the humor in your post despite the challenges you were facing, you guys were determined and you got quite a story out of it!

                      Hope the infections are minimal for you. Iím traveling to Asia this week and am just a bit nervous, noticed my throat was a little scratchy this morning so now Iím going to be paranoid about it

                      Anyway hope it has been otherwise well tolerated for you!

                      Take care
                      MisterMan,

                      Thank you! Iím so glad you could find something beneficial from what I posted. I tend to OVERSHARE! Haha!

                      Asia sounds like quite a journey! I hope it went well for you!!
                      DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                      "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                      - 2 Corinthians 4:16

                      Comment

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