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    HORRIBLE COPAXONE REACTION

    I have taken Copaxone for several years.
    On Friday, ready for bed, took my shot. 3 - 40mg /week
    Same lot. No new meds.

    Took the shot on the leg, very shortly I had by far the worse reaction.
    Could not breathe, chest pains, whole body was in spasms, severe metal taste in mouth.
    called 911.

    Overall things calmed down in 20 minutes with the breathing but he spasms or convulsions lasted for several hours.
    Neurologist said he NEVER heard of this.
    has anyone experienced this themselves? Have I now built up an allergy or intolerance for Copaxone?

    #2
    Reason for Horrible Copaxone Reaction

    After a conversation with a Shared Solution nurse last evening, I learned that 2% have this reaction. It can happen at any time and they don't know why.
    To me that was good news.
    They are sending a nurse out for my next injection just so I am not alone should I have another reaction right away.

    Comment


      #3
      Sorry to hear you had this reaction! Yikes! Sure sounds scary. Glad a nurse will be there for your next injection. Hope it doesn't happen again! Quite honestly, I don't think I'd want to try the 40 dose again. But, I know that's the only way they'll know if it was a one time thing or not.

      I was on a different medication, Rebif, for 2 1/2 years (no problems), after being on Avonex (a lower dose interferon 1a) for a year. Then out of the blue, had a really high fever (106 F). Spent the next 3 months in the hospital, fighting dangerously high fevers. Would finally break, just to start all over again. One day a week, had no fever. It was always the same day, Sunday. Finally made a connection of the timing of my fevers, and told them I wanted to stop the medication. Arrogant neuro stopped in twice to tell me the medication wasn't the cause, and I must continue taking it. I refused it anyway. No more fevers. Neuro said it was only a coincidence. Finally had the courage to inject again a few months later. Same thing ... another high fever shorty afterwards. So, stopped taking it. A new neuro suggested trying it again, but by slowly titrating up to the 1/2 dose. (Also checked for neutralizing antibodies, guess that can cause weird symptoms - but don't think that's a problem with Copaxone). Had another high fever just under the 1/2 dose. So not a med I can take anymore, period. Don't know if anyone else ever had a reaction like this, years later, the incidence of this occurring is still listed as "unknown."

      Hope your next injection is unevental. Best of luck and please let us know how it went.
      Kimba

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

      Comment


        #4
        laheisey, it's been a decade since I experienced a similar reaction and doc discontinued my Copaxone rx. Like you, I was on Cop about 2yrs., and after an injection found myself in a fetal position with 'convulsion', cold sweat, more than I can remember after so many years.

        The Shared Solutions? MS nurse had never heard of this type of reaction related to Cop and doubted it was related. My MS doc on the other hand discontinued my Cop rx, but did not report it as an 'adverse event'.

        Copaxone formulation had recently changed from reconstituted formula to pre filled syringe formula. I'm not sure if the change had anything to do with the reaction, but I've always suspected that it was related.

        Good to hear SS is taking it seriously and sending a nurse out to monitor your next injection. Best of luck.

        Comment


          #5
          Thank you

          Thanks Kimba
          Well I want to stay on the Copaxone so I have to try it again.
          There is only 2% that have this severe of a reaction.
          It can happen again but may never happen either so I have to take a chance.

          Thanks much.

          Comment


            #6
            Yes; it is called an IPIR (Immediate Post Injection Reaction). I've read about them, but have never had one. I've was on Copaxone 20 for about 7 years, and I switched to Copaxone 40 in April 2015.

            Sounds scary, but I'm glad that, if Copaxone has been effective for you, that you're remaining on it. I suspect it's likely that you'll never have one again.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Originally posted by Mamabug View Post
              Yes; it is called an IPIR (Immediate Post Injection Reaction). I've read about them, but have never had one. I've was on Copaxone 20 for about 7 years, and I switched to Copaxone 40 in April 2015.
              Thanks, Mamabug! I was on Copaxone for about a year, but had forgotten all about IPIR (obviously never happened to me, either - am SO grateful about that!). Don't think you could ever prepare yourself for that reaction, but hopefully helps to at least know what it is.

              Prescribing info states:

              Some patients report a short-term reaction right after injecting COPAXONE®. This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and do not require specific treatment. During the postmarketing period, there have been reports of patients with similar symptoms who received emergency medical care. If symptoms become severe, call the emergency phone number in your area. Call your doctor right away if you develop hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, or severe pain at the injection site. If any of the above occurs, do not give yourself any more injections until your doctor tells you to begin again.

              Chest pain may occur either as part of the immediate postinjection reaction or on its own. This pain should only last a few minutes. You may experience more than one such episode, usually beginning at least one month after starting treatment. Tell your doctor if you experience chest pain that lasts for a long time or feels very intense. https://www.copaxone.com/about-copaxone/copaxone-40-mg

              Thoughts are this happens when the medication gets into the bloodstream. ,More information: http://ms.about.com/od/treatments/a/copaxone_IPIR.htm.

              Glad you are committed to staying on your therapy, laheisey, and best of luck!
              Kimba

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

              Comment


                #8
                I had a similar reaction when I first started it in 2007, I passed out cold. I did my next shot at the doc (she administered it) with no reaction.

                Ever since then I manually inject to get the medicine in slowly and for the first year or so laid down to do it, you can't pass out when laying down. I'm not sure if you use the auto injector or manually inject but it's worth a try if you auto inject.

                We can't get the 40mg in Canada so I can't comment on that but if you could possibly go back to 20mg it may help as you're not injecting as much medicine at one time.

                I have never had another reaction since then and I've been on it for just over 8 years. Please keep us updated on how you're doing.

                Jen
                RRMS 2005, Copaxone since 2007
                "I hope to be the person my dog thinks I am."

                Comment


                  #9
                  Short term raction

                  Yes, once before I has the Short term reaction. That lasted about 10 minutes. Shortness of breath.
                  This time was much longer, very much more intense. The overall pain, the violent shaking. It was not the standard short term reaction.







                  Originally posted by Kimba22 View Post
                  Thanks, Mamabug! I was on Copaxone for about a year, but had forgotten all about IPIR (obviously never happened to me, either - am SO grateful about that!). Don't think you could ever prepare yourself for that reaction, but hopefully helps to at least know what it is.

                  Prescribing info states:

                  Some patients report a short-term reaction right after injecting COPAXONE®. This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and do not require specific treatment. During the postmarketing period, there have been reports of patients with similar symptoms who received emergency medical care. If symptoms become severe, call the emergency phone number in your area. Call your doctor right away if you develop hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, or severe pain at the injection site. If any of the above occurs, do not give yourself any more injections until your doctor tells you to begin again.

                  Chest pain may occur either as part of the immediate postinjection reaction or on its own. This pain should only last a few minutes. You may experience more than one such episode, usually beginning at least one month after starting treatment. Tell your doctor if you experience chest pain that lasts for a long time or feels very intense. https://www.copaxone.com/about-copaxone/copaxone-40-mg

                  Thoughts are this happens when the medication gets into the bloodstream. ,More information: http://ms.about.com/od/treatments/a/copaxone_IPIR.htm.

                  Glad you are committed to staying on your therapy, laheisey, and best of luck!

                  Comment


                    #10
                    Reaction

                    So Shared Solutions nurse came to house on Saturday.
                    We discuss everything then I administered by injection.
                    I ALWAYS manually inject and always have.
                    There was NO issue at all this time.
                    However, I realize it could happen again.
                    I just was too afraid to try again alone.





                    Originally posted by MSW1963 View Post
                    laheisey, it's been a decade since I experienced a similar reaction and doc discontinued my Copaxone rx. Like you, I was on Cop about 2yrs., and after an injection found myself in a fetal position with 'convulsion', cold sweat, more than I can remember after so many years.

                    The Shared Solutions? MS nurse had never heard of this type of reaction related to Cop and doubted it was related. My MS doc on the other hand discontinued my Cop rx, but did not report it as an 'adverse event'.

                    Copaxone formulation had recently changed from reconstituted formula to pre filled syringe formula. I'm not sure if the change had anything to do with the reaction, but I've always suspected that it was related.

                    Good to hear SS is taking it seriously and sending a nurse out to monitor your next injection. Best of luck.

                    Comment


                      #11
                      In my opinion the printed side-effect information from TEVA leaves out some features of the IPIR. One of them being the chills. I know not everyone gets them with an IPIR but for me they were the worst part- because they went on so long- about an hour.

                      The other thing I experienced that they left out is severe but short term joint pain mostly during the first 10-20 minute flushing, chest pressure, etc part of the reaction.
                      When I had my first IPIR I called Shared Solutions and they did tell me that the chills and joint pain might happen. The second time I had a full-on IPIR (which was 3 years after the first) I knew to break out the down comforter (in the middle of summer) immediately. It may have helped with the chills a little.

                      I did end up having a lot of anxiety around doing injections and became non-compliant. Plus finding places to inject that weren't scar tissue was getting hard. Eventually I made the call that if I was skipping shots, it was time to try something else. I will say it was effective for me and I don't regret staying on it after the first reaction.
                      dx: RRMS 8/2010; rx: Tecfidera 2/2016; Copaxone 8/2010

                      Comment


                        #12
                        Betaferon

                        Hi, I'm on betaferon 1mg and have been for about 13 years now. I get reactions out of my the blue. Chills and spasms. I find if I take 2 paracetamol within 20 minutes it stops them.

                        Comment


                          #13
                          Copaxone Chills (the 2 percenters)

                          Originally posted by TheMiddleWay View Post
                          In my opinion the printed side-effect information from TEVA leaves out some features of the IPIR. One of them being the chills. I know not everyone gets them with an IPIR but for me they were the worst part- because they went on so long- about an hour.

                          The other thing I experienced that they left out is severe but short term joint pain mostly during the first 10-20 minute flushing, chest pressure, etc part of the reaction.
                          When I had my first IPIR I called Shared Solutions and they did tell me that the chills and joint pain might happen. The second time I had a full-on IPIR (which was 3 years after the first) I knew to break out the down comforter (in the middle of summer) immediately. It may have helped with the chills a little.

                          I did end up having a lot of anxiety around doing injections and became non-compliant. Plus finding places to inject that weren't scar tissue was getting hard. Eventually I made the call that if I was skipping shots, it was time to try something else. I will say it was effective for me and I don't regret staying on it after the first reaction.
                          The chills, and accompanying fever, can be a stand alone side effect as well. While the IPIR affect ~10% of the users, the chills fever side effect only hits about 2%. This hit me on the 4th and 5th dose, about 1 1/2 to 2 hours after the injection. The fever lasted about 5 hours.

                          I talked to the shared solutions folks the morning after the second reaction. They called to make sure I was doing OK with my new med. I gave that poor lady an ear full. She told me it was a rare reaction, which I confirmed on the prescribing sheet.

                          I also called my neuro's office and asked whether or not I should stop using copaxone, or take a pre-emptive ibuprofen prior to my next injection. He prescribed a 600mg ibuprofen 1 hr prior to my injections. I had no reaction on the next couple of doses. So, on my own, I tapered the ibuprofen off over 2 weeks. No chill/fever reaction afterwards.

                          On my next neuro visit, he almost switched my med since he had never had a patient with that reaction. I talked him into letting me continue while I finished tapering off the ibuprofen to see if I adjusted to the copaxone, which I did.

                          BTW, That reaction is what led me to this site, and others like it, when I googled my copaxone reaction. I found at least 2 others who described exactly what I went through. They even had it on the 4th dose, then adjusted. One with ibuprofen.

                          Best wishes,
                          Bill C.

                          Comment


                            #14
                            Welcome to MSWorld, Bill. I've read some of your recent posts and see that you are a fairly new poster. Hope you'll keep coming back. Feel free to introduce yourself here: http://www.msworld.org/forum/forumdi...About-Yourself!
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                            Comment


                              #15
                              1st flush in 8.5 yrs using COPAXONE was pretty scary!!

                              Hi Bill,
                              I recently had my 1st ever `flush`after injecting and even though I realised what it must be it frightened the life out of me, so I understand how you must be feeling! First I had a semi black-out and when I came round I felt as though i couldn`t breathe and then had, like you, chills. The grand finale was sudden stabbing back-pain, I felt I couldn`t lie down, sit up or stand (according to my neuro that`s "unusual"!) . It was all over in about 10 mins but was really nasty and made me decide for the first time in my MS career to seek out some fellow sufferers. I`d been thinking about trying out the 40mg injections but after this reaction I can`t help thinking if it happened again it could be even worse!

                              Comment

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