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1st IPIR Copaxone after 3 years?

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    #1

    1st IPIR Copaxone after 3 years?

    I've been on Copaxone 3 years, last night I got the dreaded IPIR for the 1st time. While I knew what it was, I tried to remain calm and after about 20 minutes it was over, then about 1/2 hour later I got hit with the worst chills I have ever had. Today, I'm tired, drained, have had a headache and my chest just feels like I pulled a muscle. I'm really leary now about continuing my shot, I've never had a problem till last night. I call Shared Solutions, they agreed it was an IPIR, they tell me to call my (Dr) neuro, he tells me to call Shared Solutions. That just really showed me that no one has a clue about the IPIR's. IF it would be a allergic reaction could not bendryl before a shot help. IF it is a problem with hitting a blood vessel, could they not figure this out by now? They just all seemed shocked after 3 years I got the IPIR, the only change on my end was I was off my BP meds for the last week. (of course back on them now). Just was a scary situation last night and a little more than I care to relive.
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    #2
    Sorry

    I'm at the four and a half year ... I had an IPIR last year at the three year mark, wound up in the hospital because i had told my husband to help me up off the floor (passed out) and when he did I seized ... (you shouldn't sit up straight when you've passed out, but the literature doesn't acknowledge that.) I asked them to add that caviat to the literature but they said no, that would confuse patients ()

    Sorry you experienced that. I had one earlier at two years with just the pain and chills ... no flushing, so they said that wasn't an IPIR. No? it was immediately after the shot, and it certainly was a reaction of some sort ...

    I got the same "call the nurses" frm my neuro the next day...

    This is really a "DIY" project gone bad ...
    First symptoms: 1970s Dx 6/07 Copaxone 7/07 DMD Free 10/11
    Ignorance was bliss ... I regret knowing.

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      #3
      would bendryl about a half hour before shot curb the reaction?
      Seems to me this reactions are more than the 10% they claim. I'm just so upset now because I had never had a problem with Copaxone, was happy with it and yet all these questions and no answers to this IPIR and why it comes on.

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        #4
        Originally posted by chalknpens View Post
        I'm at the four and a half year ... I had an IPIR last year at the three year mark, wound up in the hospital because i had told my husband to help me up off the floor (passed out) and when he did I seized ... (you shouldn't sit up straight when you've passed out, but the literature doesn't acknowledge that.) I asked them to add that caviat to the literature but they said no, that would confuse patients ()

        Sorry you experienced that. I had one earlier at two years with just the pain and chills ... no flushing, so they said that wasn't an IPIR. No? it was immediately after the shot, and it certainly was a reaction of some sort ...

        I got the same "call the nurses" frm my neuro the next day...

        This is really a "DIY" project gone bad ...
        Chalk,I always like your posts and looooooooooove your regret knowing statement. Can you explain to me exactly,as much as you can what the IPIR feels like? What it is? What IPIR is an abbreviation for? I am on copaxone. I hate it. I now take it every other day and sometimes accidentally on purpose forget to take it. Why do we take this stuff?

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          #5
          I had my first IPIR ( immediate post injection reaction,billiejeane ) at two years in.

          It felt very much like a severe panic attack and it lasted about 10 minutes, give or take. They don't know exactly what causes it, just that as nasty as they are, they aren't harmful. That was good enough for me. I continued to take it off and on for almost another two years. The one I did have did not occur after hitting a vein and I have hit veins numerous times after, with no IPIR


          GracieBH,
          would bendryl about a half hour before shot curb the reaction?
          It isn't an allergic reaction, so Benadryl likely wouldn't do much by way of lessening or preventing an IPIR. Talk to your dr and get their take. Most will just have you report it to Shared Solutions for their stats. It's really just a very unpleasant reaction that for most never happens and if it does, often happens just once or twice in your Copaxone "lifetime".

          As I said, they don't know exactly why it happens, so there may be no answer for you, GracieBH. If it's truly a concern that shakes your confidence in Copaxone, talk to your neuro. They may be able to answer some of your questions or even discuss your options if you're considering changing DMDs because of the IPIR.

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            #6
            It did shake my confidence that's for sure. I still haven't felt right or good since that happened.

            I will say that IPIR is a far cry from a panic attack. I'm not trying to scare anyone and I plan to start my shots again tonight, but I'm calling my regular doctor first today I did call Shared Solutions and my neurologist, they passed it back and forth between each of them.

            My neurolgist even said, maybe it wasn't an IPIR, are you freaking kidding me? Yes I'm angry because I know what an IPIR is and so should he. And when you call in with a IPIR, you'd think they would ask some questions, might help with trying to figure our the cause. How does one know that the mixture in the shot wasn't off when they made it? Seems to me that would be a possiblity and I think following thru with questions to the patient would be of benefit too.

            That is why I come to these boards, they have more knowledge and information to help people understand or to compare notes etc... If it wasn't for this board I'd be flying blind!

            Thank God for this forum, it really helps.


            ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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              #7
              I had IPIR a month after starting Copaxone. We panicked and called 911. They took me to the hospital where I stayed for a couple of hours. I called Shared Solutions and my neuro and they both assured me that it usually happens only once. Neuro told me to wait a couple of days before I started back because she knew I was still shook up. When I started back I called Shared Solutions and the nurse talked me through the injection. If it wasn't for SS I probably would never had started back again. On November 19 it will be one year

              Take good care!
              "Irrespective of what happened yesterday or last year, and what may or may not happen tomorrow, the present moment is where you are-always!"
              Richard Carlson, PH.D.

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                #8
                Originally posted by GracieBH View Post

                I will say that IPIR is a far cry from a panic attack. [/COLOR][/I]

                Maybe my panic attacks are more severe than average or the IPIR more mild. I saw very little difference between the two. But that's my experience.

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                  #9
                  I guess what I was trying to say about panic vs the IPIR was because I suffer from panic attacks so this IPIR just has rocked my confidence on handling anxiety again.

                  My IPIR started within about 3 minutes. I got this funny metal taste in my mouth, then all at once I felt like I was being suffocated and someone had a pile of bricks on my chest and my head.

                  I then remembered what SS said to do, I went and sat upright, breathed slowly which was hard to even get a breath. I kept just saying this will be over soon while my head hurt, my ears hurt and then I got a little nauseated. The severe part passed in about 10 minutes, leaving me stunned and exhausted. Then the chills hit, never experienced chills so severe, those lasted about an hour.

                  I have to be honest, I have not done the shot yet again. I can handle the rest of the stuff, the memory though not being able to breath and feeling like I was being squished I can't shake yet, in fact it scares me. I feel like I've take 10 steps back from when I was first diagnosed and it sucks.

                  Comment

                    #10
                    Originally posted by GracieBH View Post
                    I guess what I was trying to say about panic vs the IPIR was because I suffer from panic attacks so this IPIR just has rocked my confidence on handling anxiety again.

                    My IPIR started within about 3 minutes. I got this funny metal taste in my mouth, then all at once I felt like I was being suffocated and someone had a pile of bricks on my chest and my head.

                    I then remembered what SS said to do, I went and sat upright, breathed slowly which was hard to even get a breath. I kept just saying this will be over soon while my head hurt, my ears hurt and then I got a little nauseated. The severe part passed in about 10 minutes, leaving me stunned and exhausted. Then the chills hit, never experienced chills so severe, those lasted about an hour.

                    I have to be honest, I have not done the shot yet again. I can handle the rest of the stuff, the memory though not being able to breath and feeling like I was being squished I can't shake yet, in fact it scares me. I feel like I've take 10 steps back from when I was first diagnosed and it sucks.
                    Oh my. I hate copaxone and I have never had the IPIR. I have noticed about 1 time a month,chest tightness and shortness of breath but not after the shot. Maybe the next day and it lasts for a few days. I started copaxone in 2009 and was very compliant with it up until a year ago when I started trying to pinpoint what was making me feel so bad.

                    And I have said this before and I am gonna say it again.....It is not the disease progressing.....I know in my heart its all the sx management crap and the copaxone. Now I take C every other day and sometimes skip it for a few days. And what you went through,myself,I would be terrified to take it again. In fact,I think I am gonna skip the crap tonight! I am so sorry you went through that. Its like the 1st time you ever have a panic attack.....you will never forget it and your brain goes into a bizarre chemical depression after.

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                      #11
                      Well, I got the confidence back and did my shot and no problems! I figured it was now or never so I went for it and while I was very nervous, I decided to do a manual injection so I had more control and waited. NOTHING happened, I'm so happy and now I can enjoy my night!

                      Comment

                        #12
                        Originally posted by GracieBH View Post
                        Well, I got the confidence back and did my shot and no problems! I figured it was now or never so I went for it and while I was very nervous, I decided to do a manual injection so I had more control and waited. NOTHING happened, I'm so happy and now I can enjoy my night!
                        Yay! Best to get right back on the horse...congrats!

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                          #13
                          IPIR after 5 years

                          After my IPIR I posted on every site I could find. So that other MS patients would know how terrifying this reaction is.
                          SS does not do a good job prepairing Copax users for how bad the pain is. It is easily the most severe pain I have ever had. The pain was concentrated in my kidney area and I felt like I was going to pass out. My face felt hot and my wife said my face and neck were red.

                          I salute your courage to proceed with your injections. It has been 2 months since my IPIR and cannot find the courage to inject again. I will see my Doctor this month and decide what to do then.
                          Yogi
                          "Those who agree with us may not be right, but we admire their astuteness."
                          -C.Hightower-

                          Comment

                            #14
                            I have to agree the company could do a lot more when it comes to preparing people for the IPIR. I did another shot today with no problem, but the effects of the IPIR mentally are still there.

                            But I had to make the decision to continue with a medication or start all over with another one. Copaxone has worked for me so far, so I plan to continue with it.

                            I really think Shared Solutions need to put a lot more effort and research and ask patients questions when they have these reactions. Instead they just try to simplfy it and say well this can happen, but don't panic. Not good enough when your on the other end of the needle.

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                              #15
                              I agree

                              The mental aspects of it made me hesitate to keep doing it. But I did and my reactions got stronger and worse. That last time I probably should have gone to the ER, but I survived.

                              I wish I could have kept going with taking the copaxone because it was doing what it was supposed to do. But I could not continue mentally injecting myself with something that I knew could make me so sick.

                              So I made the decision to stop and go to a different med. I just hope that it works as well for my MS as the copaxone did.

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