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had 1st Ocrevus infusion yesterday

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    had 1st Ocrevus infusion yesterday

    Lovely nurse (I'm the 96th patient she currently treats with Ocrevus), lovely private room, but the rest of the day was hell. I wasn't expecting the needle to go in at my wrist, so that hurt. They started me off with Benadryl, aspirin, and an IV bag of something else to prevent reactions. They didn't work.

    I was fine the first hour. Within 15 minutes of upping the Ocrevus dosage, I'd developed rashes all over my face, my throat was closing, left arm kept spasming, I had an instant UTI, as well as the itching in the ears. The nurse took one look at me, shut down the Ocrevus, and called the doctor. They gave me a double dose of IV Benadryl and the other IV drug, and within seconds I was fine.

    The whole process only took 4 hours, and that included the hour at the end to monitor me. By that point, I was pacing the floor. I discovered that I'm one of those strange people who gets incredibly high from industrial-strength Benadryl, so I was bouncing off the walls until 2:30 this morning. That was even after my son took me shopping for several hours so I could burn off some of the energy!

    Today I'm just very tired, presumably from lack of sleep, although my left arm keeps spasming and my right leg is going out from under me (which is normal when I'm too tired).

    What I'm wondering is if my reaction to the Ocrevus could turn into anaphylaxis next time? From everything I've read, no one's had that severe a reaction. My neuro wants to see me before I get the second half, but my understanding from the nurse is that he's never cancelled it for a patient. I'm willing to try it again, but I do hope it's a happier occasion!

    #2
    OMGoodness NoraS a severe reaction is an understatement and an instant UTI! I'm sorry you had to endure that. I'm glad the nurse and Dr got it undercontrol and you were able to continue the infusion

    If you do go for the 2nd infusion I also hope it's a happier occasion.
    God Bless Us All

    Comment


      #3
      Wow. What a rough start. Here is hoping the 2nd goes far better. Wish I had some answers for you.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by NoraS View Post
        I'm willing to try it again, but I do hope it's a happier occasion!
        I hope so too! So sorry about the reactions. No fun

        How are you feeling today?
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          Hi Nora,

          So sorry to hear about your infusion. Wow, what scary experience!

          Originally posted by NoraS View Post

          I wasn't expecting the needle to go in at my wrist, so that hurt.
          I don't like IVs there, either. Did the nurse have a hard time finding another vein? Hydrating well before your can infusion help.


          Originally posted by NoraS View Post

          and an IV bag of something else to prevent reactions.
          That is methylprednisolone or equivalent corticosteroid


          Originally posted by NoraS View Post

          Nora
          I was fine the first hour. Within 15 minutes of upping the Ocrevus dosage, I'd developed rashes all over my face, my throat was closing, left arm kept spasming, I had an instant UTI, as well as the itching in the ears.
          Your reaction sounds awful. Did you just feel like you had a UTI or actually come down with one? The rash and especially your throat closing up sound alarming. I'm so glad the extra benadryl and steroids resolved it quickly!

          Originally posted by NoraS View Post
          What I'm wondering is if my reaction to the Ocrevus could turn into anaphylaxis next time? From everything I've read, no one's had that severe a reaction.
          I haven't heard of spasming or an instant UTI before as a reaction, but the others are known possible side effects. I get spasms from pain, but not sure that's what's caused yours. Here's some information about infusion reactions:

          Originally posted by Ocrevus.com
          What to know about infusion reactions

          It's important to understand possible risks and side effects before starting treatment. OCREVUS can cause infusion reactions that can be serious and require you to be hospitalized.

          You will be monitored during your infusion and for at least 1 hour after each infusion of OCREVUS for signs and symptoms of an infusion reaction. Infusion reactions can occur for up to 24 hours after your infusion. Tell your healthcare provider or nurse if you get any of these symptoms:

          itchy skin
          rash
          hives
          tiredness
          coughing or wheezing
          trouble breathing
          throat irritation or pain
          feeling faint
          fever
          redness on your face (flushing)
          nausea
          headache
          swelling of the throat
          dizziness
          shortness of breath
          fatigue
          fast heart beat

          In clinical studies, infusion reactions were highest at the first dose. (Please refer to the the URL provided at the bottom to see the bar graph.)

          Data shown are from relapsing MS studies. (Study 1 and Study 2) and are comparable with rates seen in the PPMS study (Study 3).

          OCREVUS can cause infusion reactions that can be serious and require you to be hospitalized. Infusion reactions were most common during or within 1 hour after the infusion. Most infusion reactions were mild to moderate, and treatable with infusion adjustments and medicines to help with the reactions

          These are not all of the side effects associated with OCREVUS.
          https://www.ocrevus.com/patient/taki...-reaction.html
          Severe reactions occurred less than 30% in clinical trials. Life threatening reactions less than .1 %. Some required hospitalization.

          The data suggests that infusion reactions decrease over time. (See the bar graph in the URL provided.) But, there's no way to predict if you'll have a worse reaction in the future. Anyone can have an adverse reaction to a medication at any time. I had a sudden, life threatening reaction to Rebif after being on it with no problems for 2 1/2 years.

          Originally posted by NoraS View Post
          My neuro wants to see me before I get the second half, but my understanding from the nurse is that he's never cancelled it for a patient. I'm willing to try it again, but I do hope it's a happier occasion!
          You are braver than me, I think one time would be more than enough! Good luck with your neuro appointment and please keep us updated. Sure hope you have much better experiences if you continue with Ocrevus.
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            Wrist: No, the nurse just said that she prefers doing them there. I've apparently been blessed up to this point and didn't know it!

            UTI: Fortunately, this was just a feeling, not an actual one. It's what made me realize that something was wrong. I'd gone to use the bathroom, and then 15 minutes later i had to practically run back in there. I'm thinking to myself "OK; what's going on here? I didn't have a sign of UTI half an hour ago..." and that's when I noticed oh, hey! I'm having a bunch of those side effects I was warned about. The problems all showed up within a matter of several minutes, and thankfully everything went away once they gave me the extra Benadryl.

            Spasms: I'm thinking it's just one of my weird issues. I had the same thing during/after my nerve-conduction test and with contrast MRI's. My left arm just doesn't like being poked with needles!

            I'm still concerned about the possibility of anaphylaxis, but I'm hoping that the drug's history and my neuro's opinion can ease some of that over the next few days. I've never had any allergies or bad reactions to drugs before, so maybe that'll work in my favor. I want to stick with the Ocrevus if it's at all possible.

            Because of the time it took to diagnose me and the way I've deteriorated in recent months, my neuro said that he believes that without this particular DMT I will definitely be in a wheelchair within 5 years. I want to give it another try unless he determines it'll be too dangerous.

            Comment


              #7
              Originally posted by NoraS View Post
              Wrist: No, the nurse just said that she prefers doing them there. I've apparently been blessed up to this point and didn't know it!
              Really? Sorry, but if you are not a hard stick, there should be no reason to go there. It's not ideal because there are a lot of nerves and tendons there. It really shouldn't be one of the first sites selected. IMO, a good nurse should also ask first where you think is a good place for you. There are several vein sites that can should be tried first instead in your arm and top of your hand.

              In case you are interested, these are usually tried first:

              -Median cubital vein (you just have to be careful not to bend your arm with this one)
              -Accessory cephalic vein
              -Median vein of the forearm (Antebrachial)
              -Venous dorsal network on top of your hand

              I'd ask her to try one of those locations first next time. It's when those veins can't be accessed it's time to look for other sites.

              Originally posted by NoraS View Post
              UTI: Fortunately, this was just a feeling, not an actual one. It's what made me realize that something was wrong.
              That's still so bizarre! Glad to hear it was just a feeling, and not an actual UTI.

              Originally posted by NoraS View Post
              I'm still concerned about the possibility of anaphylaxis, but I'm hoping that the drug's history and my neuro's opinion can ease some of that over the next few days. I've never had any allergies or bad reactions to drugs before, so maybe that'll work in my favor. I want to stick with the Ocrevus if it's at all possible.

              Because of the time it took to diagnose me and the way I've deteriorated in recent months, my neuro said that he believes that without this particular DMT I will definitely be in a wheelchair within 5 years. I want to give it another try unless he determines it'll be too dangerous.
              Yeah, I understand your concerns.

              I never had reactions to drugs until I did. That's a chance we all take with medications. For that matter, true with just about everything we are exposed to. My Rebif reaction just seemed to pop up out the blue.

              I had a rare reaction that wasn't documented before. At first it was thought to be from an infection from another surgery two months prior but that was quickly ruled out. It also didn't help that the hospital neuro who had my case adamantly refused to believe it was a from the medication and kept me on it. I get that at first, but he should've noticed the documented pattern. I don't doubt one of my nurses did. I spent a 3 month nightmare in the hospital until I was finally well enough one day to put things together myself and refuse it. I would have been there indefinitely if it had been up to him. Then he said it had to be a coincidence. (Later, proved that to be wrong.) What an ego.

              A friend of mine got Eosinophilia–myalgia syndrome (EMS) back in the late 80s from a supplement. That whole thing could've been avoided except for the greediness of the manufacturer in Japan. So sad. The US government sued them, but doesn't bring back your health.

              The first infusion has the greatest number of reactions, the 2nd dose the least, so at least that part is in your favor.

              Sorry to hear you've been deteriorating so much and hope you'll do well if you stay on Ocrevus. Please keep us updated, ok?
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment


                #8
                Wow, I am so sorry you were going through all of that!!! I am kind of a hard stick, so they had to get a vein in my wrist and I had to keep my wrist straight for six hours.

                The other reactions you had were just awful..>I am so sorry!!!
                Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                Comment


                  #9
                  Bless your heart, Nora, I hope things go much better!

                  In the Ocrelizumab sticky above there is more detail about Ocrevus quoting from the 180-page European Medicines Agency assessment. But here I want to re-emphasize a passage from page 172…

                  “The higher incidence of malignancies, with a cluster for breast cancer, observed in OCR-treated patients relative to comparator (IFN or placebo) is a cause of concern, particularly as age >55 years was an exclusion criteria.”

                  https://www.ema.europa.eu/en/documen...-report_en.pdf

                  Well yeah, breast cancer is a cause for concern and even more so if someone in the family suffered from it. Cancer of any kind is more likely as we age and it is important to note that there were several cases of breast cancer in Ocrevus trials and no cases of breast cancer in the Rebif or placebo arms of those trials. Also, no one over 55 (risk of cancer increases with age) participated which means all cancer cases were in ages under 55. It makes me wonder if cancer cases have begun to appear in the over age 55 using Ocrevus but there is a time lag in reporting.

                  I have concerns related to something Kimba posted when she said, Quote “… My Rebif reaction just seemed to pop up out the blue. I had a rare reaction that wasn't documented before. At first it was thought to be from an infection from another surgery two months prior but that was quickly ruled out. It also didn't help that the hospital neuro who had my case adamantly refused to believe it was a from the medication and kept me on it.

                  I get that at first, but he should've noticed the documented pattern. I don't doubt one of my nurses did. I spent a 3 month nightmare in the hospital until I was finally well enough one day to put things together myself and refuse it. I would have been there indefinitely if it had been up to him. Then he said it had to be a coincidence. (Later, proved that to be wrong.) What an ego.” End Quote.

                  I wonder if side effects of MS DMTs are under-reported? What if, because of ego, investment, or any other reason a neurologist does not connect a side effect to a DMT? Kimba was in the hospital 3 months w/o the neurologist making the connection to her DMT!

                  Also, relative to under-reporting, in my own experience on the phone with Biogen they were very, very surprised to learn my spouse had suffered a major flare-up on Avonex because it had never been reported to them even 4 years after.

                  I am concerned breast cancers cases may already be popping up on Ocrevus but are reports lagging? Time will tell but I suspect Ocrevus may eventually exhibit more problems than we know about, as of yet. All this is just my two cents. I sincerely hope I am wrong but just as sincerely believe I may not be.

                  Comment


                    #10
                    Myoak, you have been fairly anti-Ocrevus for a while and have had a negative experience via your wife who made the switch from Tysabri. I am on the flip side. After 2 relapses per year and new lesions every year, I made the switch to Ocrevus from Copaxone and then Gilenya. So far almost three years of no relapses and no new lesions.

                    With respect to the cancer risk, I time mammograms and ultrasounds 6 months apart so there´s testing on a more frequent basis. Got genetic testing done to see if I carry the genes tied to breast cancer. I avoid foods that are linked to breast cancer. Yes, there is still a risk- but- the flip side was getting worse (JVC + so Tysabri was out). I get the flu shot, had the Shingrix vaccine and avoid sneezers and coughers. It´s all about a personal risk:reward ratio.

                    Comment


                      #11
                      Thankyou, Myoak! Somehow I missed that in the Ocrevus information. It's a definite concern. Jumping to my post about losing my insurance if I'm approved for Disability, I resolved the major issues this morning.

                      My neuro has a number of patients using Ocrevus' patient-financing program, and he's pretty sure I'll qualify for it if I don't have insurance. My mother is willing to cover mammograms as long as she's not otherwise supporting me. The neuro feels it's in my best interest to continue with the Ocrevus, and we'll just deal with anything else if it happens.

                      I go in for Part 2 of the first dose next week, but because of my reactions he's putting me on oral Benadryl and steroids today, with an optional sleep aid for after. He believes that my hyperness (is that even a word?) last time was caused by the double dose of steroids they gave me after the reaction, rather than the Benadryl.

                      i've never had steroids before, so that never occurred to me.

                      Comment


                        #12
                        You are welcome, Nora. It may comfort you to know that infusions seem progressively less onerous each time, typically.

                        Temagami, thank you for speaking up and sharing your experience! It is so helpful when people talk about it.

                        I'm don't believe I am overtly anti-Ocrevus (unless experience and data appears supporting that position) because I believe Ocrevus is a very good DMT for MS. But you are correct that it has not been as good as Tysabri was for my wife. More fatigue and more spasticity but even more concerning is my continuing education about the negative effect Ocrevus has on the immune system whereas Tysabri is much less so. That point, is why your characterization of me being "fairly anti-Ocrevus" is accurate. I think its fair to say that as long as we understand it isn't an attitude; I'd rather characterize it as informed opinion, of course!

                        Ocrevus concerns me because living in a permanent state of significant immune system suppression may be (and is) helpful against MS but remaining in that state could, in time, have serious health consequences.

                        Even though it has unfortunately become standard practice for many neurologists, personally, I do not at all buy into the thought that JCV+ means Tysabri is automatically out. Studies prove PML risk can be reduced by about 90% extending time between doses.

                        Also, my wife got her first dose of Tysabri in March of 2002 and last dose about 14 years later and was JCV+ with a high titer from her very first JCV test which was 8 or 9 years ago, I believe. She was among the first to go on dose extension with Tysabri and did very well.

                        Interestingly, she was one of the first to go on dose extension with Ocrevus, also. The reason is simple... why keep killing something already dead? Ocrevus targets certain B-cells, called CD20. So, my wife has a blood test to see if those have re-populated, and if they have not, why get another infusion to kill them? So, she does not. IMO, it saves health, time, and money.

                        Each person re-populates wiped out CD20 B-cells at an individual pace between 5 months and 4 years, primarily. About 5% never re-populate them so there is no good reason to try and kill those cells every 6 months BUT there is a huge reason not to infuse that often. And that reason is to leave the immune system as intact as possible to do its job fighting infections and cancers while keeping MS at bay.

                        I am so thankful for the unusually advanced, forward-thinking treating neurologist who is, IMO, is preserving her health and possibly life for my spouse by not giving her more immune suppressing medicine than is needed. In a few years data will illuminate what value dose extension with Ocrevus has, if any. There are only a few neurologists willing to do this and I suppose they catch hell from various quarters but they blazed a trail for dose extension on Tysabri which is benefiting so many PwMS, so good on them. They have my utmost respect.

                        I have no doubt some MSers will do very, very well on Ocrevus, especially younger ones. I'm so thankful for those who do well on Ocrevus, it is tremendously effective against MS and I am glad it is an option, and it is a good option.

                        Comment


                          #13
                          I just wanted to add that the neuro told me yesterday that he's seen a lot of patients with the "instant UTI" after Ocrevus. Thankfully, it doesn't seem to have been a real problem for any of us!

                          If we're documenting side effects, this is definitely one to add.

                          Comment


                            #14
                            Once out of the trial I did the dose extension- moved it out to 9 months with the recommendation of the trial neurologist. The curious thing was that even though the CD19 count was still at 0, I was having sensory symptoms return that vanished after the infusion. Barts of London had a post about the infection risk increasing significantly after 7 years on Ocrevus.

                            I am keeping that in mind and tracking the time on drug. I am caught between being willing to do dose extensions but also wanting to get the meds while still having good insurance coverage. Knowing that I´m a high responder to Ocrevus, when forced to lose the private insurance, I can push out the dosage timing. Of course I hope that before I hit the 7 year mark there is a Bcell intervention that is more selective and less injurious to the overall immune system. For now I avoid sick people and wash my hands after shaking hands.

                            Comment


                              #15
                              Hello Temagami,

                              I'm glad you are doing well on Ocrevus. You seem to be responding very, very well on that DMT.

                              I was intrigued by your insurance comment and wanted to ask if your possible loss of coverage is because of going on Medicare? I don't want to pry so if you'd rather not say, it is perfectly okay.

                              Also, I have a comment for those who may be reading this thread and may be a little confused by you talking about CD19 and me talking about CD20, seemingly interchangeably.

                              Please understand Ocrevus and rituximab are both CD20 B-cell depleters. Since CD20 cannot be conveniently tested, CD19 is tested and used in place of CD20 in blood work since they test at nearly identical values.

                              Another comment I would make is that Ocrevus (ocrelizumab) and rituximab are selective B-cells depleters, meaning they deplete some (selective) types of B-cells, but not all types, AND they deplete those selective types at varying rates. Each person re-populates those B-cells at varying, individual rates, also.

                              Lastly, since rituximab has been in use much longer than Ocrevus, and since they both deplete B-cells similarly, rituximab data is used by some as an indicator of what may happen in a large population with Ocrevus. There are concerns BUT there are concerns and risk with every MS DMT AND there are even larger concerns with not treating MS effectively.

                              MS is a tough, tough, tough disease to treat. Individual response to each DMT varies so if you are satisfied with what you are using, switching DMTs should be done cautiously, IMO.

                              The one caution I would urge is from my household and goes as follows... for those who respond well on Tysabri the effect can be so good that it lures you into thinking your MS is not so bad, after all. Therefore thinking, if you switch DMTs, you will continue being fine relative to MS w/o having exposure to PML on Tysabri. However, you may respond to the switched DMT as well, PLUS, what are the real risks of the new DMT?

                              Here is where I will speculate if no one minds. Please understand this is my opinion ONLY. Overtime, I believe Ocrevus will demonstrate a substantially higher percentage of serious health issues including cancer and life threatening infections than Tysabri, especially in those over 55.

                              Ultimately, data will emerge but it will have to be analyzed independently and very, very honestly. I'm not confident a drug company is up to the task, either. For example, if an MS patient on Ocrevus dies from cancer, pneumonia, will the cause of death be reported as only cancer or pneumonia with no mention that the patient was on Ocrevus, a potent B-cell depleter which leaves the door ajar in the immune system for those illnesses to develop?

                              Like Gretzky, I try and skate (ascertain) where the puck (DMT) is going and make my play accordingly. We all are, aren't we? God bless each one affected by this horrible disease. I think so much of each one with MS.

                              I know you have heard all kinds of promising solutions over the years, so much so that it has become a droning monotone.

                              But I can state my honest belief there are outstanding treatments in trials today that will treat MS effectively w/o the often horrendous side effects of present DMTs. I see them and I do not mean by faith; they are real, they are in trial, they are coming.

                              Comment

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