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    New here! Had my first IVIg infusion yesterday ---- terrible reaction 1 hour in...

    This was my first infusion, and it was to be done in home. All I was worried about was a bad migraine, because I already have migraines and insanely low blood pressure (96/64). I'm so glad my fiance (who is an ICU RN) was here with me. After about 45 minutes, the nurse inreased the drip flow. Not too much longer after that, I started getting the chills. They stopped the drip, my temperature went to 102, pulse rate went pretty high(over 100), and blood pressure went up too. My legs & arms locked up on me, and my teeth were chattering & I couldn't stop shaking. My lower back hurt so much, and my legs were cramping up. This lasted about 20-30 minutes. My nurse Suzie commented that my lips were VERY blue. My fiance later said how serious it really was, he's never had a patient react to a blood transfusion that way. Now for the fun part: Neuro wants me to try the same IVIg meds again, but this time, in a controlled environment like the Outpatient Oncology Center where I get my chemo. Brilliant idea. This way, they can pump me full of IV fluids, give me IV Benadryl and God forbid - worst case scenario - they are equipped for things like this.

    Anyone else have a reaction like this?

    #2
    IVIG Reaction

    Welcome to the board, I am the resident IVIG guinea pig here. Another member, Linda, had the IVIG treatment for 8 years but is not taking it now. If you read my thread entitled IVIG Infusions you will see what I have been through. All I can tell you is my experience which goes back to June of last year when I was diagnosed with myasthenia gravis in addition to MS. The neuro wanted me on IVIG infusions over 2 years ago but Medicare would not pay for them for MS at that time. When it was found I have MG in April of last year then it was approved. My neuro ordered Gammagard Liguid from the beginning but I found out later the pharmacist was substituting another brand from the formulary which was not working for me.

    Do you know how high the number for the drip was pushed up to? It has to be started slowly and moved up slowly and I cannot tolerate over 110 or I get a migraine headache. I get a total of 40 gm of Gammagard Liquid and it has to be brand specific and special ordered. It takes about 5 hours for me to get this amount. I go to an Infusion Center which also treats cancer patients. Before the IVIG is started I get liquid Benedryl, Solumedrol 125mg, a small bag of fluids in the IV line and 2 tablets of Tylenol. These are to prevent the reaction that it sounds like you got. You can read my past experiences in the other thread. After being told I was getting one brand of IVIG and finding out I was getting another I made certain to get the name off the bottle as well as the lot number when I had my most recent infusion the end of February.

    I could not tolerate the Privigen brand of IVIG and ended up in the ER and hospital in January from the side effects as I got severe diarrhea, dehydration, and was unconsious for about 5 hours at home the next day. I refused to get the infusions at home and still refuse to because of the possibility of a serious reaction as I have had anaphylactic shock from an IVP injection. Sorry, this is what brought you here but glad to have the company of another IVIG patient. If you are diabetic you need to have an IVIG brand which does not have any sugar, sucrose, etc. and Gammagard Liquid does not. I have researched the internet and learned a lot about IVIG and would recommend you do also. It is a good drug if it is administered correctly. There are about 9 different brands of IVIG and you might just need a different brand as well as being in a safer environment in case of a reaction. Just my thoughts.......

    Gabriella
    Last edited by Gabriella7; 03-06-2012, 09:37 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

    Comment


      #3
      Hi Just2Dance, and WELCOME!

      I'm one of the lucky ones who's never had the kind of grim experience you describe. In fact, I've never had an IVIG infusion.

      But I don't think I'd want to risk going through what you went through a second time.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

      Comment


        #4
        Gabriella & Agate -

        Thank you for your responses. Before the drip began, I asked the nurse how long it will run for? She starts thumbing through the paperwork sent with the meds, etc. and she commented how she usually runs it over 2-1/2 hours. I said, really? Not four? She never found the doseage rate in the paperwork. Regardless, I have no idea why they would ever have a first dose of a med like this done in home? I agree, I won't be doing my treatments in home anymore. Not worth it, at all.

        ~ Just2Dance




        Progressive RRMS, Diagnosed 1994 / IVIg Epic. Fail. 2012 / Cytoxin 2009-current / Tysabri 06-08 / Rebif 99 - 03 / Betaseron 97 - 99 / Copaxone 95-97
        Last edited by Just2Dance; 03-07-2012, 07:26 AM.

        Comment


          #5
          Just to Dance,

          OMG, you were having your first IVIG at home? After reading Gabriella and Linda's accounts of their early treatments, I am astounded. Looking forward to getting to know you-welcome to BT.

          And, I agree w your sentiment, just to dance! Yes, that would be great for all of us.
          ANN
          There comes a time when silence is betrayal.- MLK

          Comment


            #6
            Just to Dance,
            Welcome to BT. What an experience. I only know what I have read here on BT about IVIG, but I do no know that I would not want it given at home, and especially the first time. Somewhat surprised that it was ordered that way.

            Like your user name - wouldn't it be wonderful for all of us just to dance.

            Virginia
            Virginia

            Comment


              #7
              What happened to you is what I was afraid would happen to me if I had it at home. It is probably less costly to give it in the home but I do not know how experienced the people who are going to be giving it would be. I think giving it over only 2 1/2 hours is way too fast. Everything I have read calls for a slow drip over about 4-5 hours if you are getting 40 gms. If you are getting more the time would increase. I believe Linda posted her amounts and time as being about 7 10gm bottles in 7 hours. She can correct me if this is wrong.

              Are you going to have it once a month?

              Gabriella
              Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
              Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

              "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

              Comment


                #8
                Gabriella,

                Looking at the bottles, I'm getting 30gm of Gammagard and the instructions are to have the drip run over 2-1/2 hours. Now, like you - everything I have read, and been told from my neuro says at LEAST four hours. My neuro has ordered me to have this first "round" once a day for four days, then once a week for four weeks. Then, I believe once a month after that (if it is helping halt the lesion activity). Our goal is to get me off of the chemo that I've been on for over 2-1/2 years now (currently at 2632mg of Cytoxin).

                Comment


                  #9
                  Put it in Writing!

                  Hi, The first round I had was last year and I got 5 days in a row, then the next month I got 3 days in a row, and then I got it once a month. Each time I got 40gms and it lasted at least 4 hours as you indicated. I think I remember you are going to have it done at an infusion center the next time. Hopefully, the nurses will be more experienced and give it to you slowly enough that you will not have the reaction you had at home. You will have a headache if it is given too fast. The nurses titrate it up very slowly when I get it. It is started at 35, then 50, then 75, and finally 100. They program it into the machine that delivers the IVIG. I don't know what the spacing of time is but it always takes over 4 hours and there is a reason for it to be given s l o w l y.

                  This is a suggestion and is what I did after my reaction in January which I had due to the change in the brand of the IVIG. I typed up a narrative of everything that happened to me after the infusion. I faxed it to my doctor and carried a copy of it when I went back in February to give to the nurse that was going to infuse me. It seems to be official and carry more weight if it is all put in writing. If I were you I would keep the Gammagard bottles which have the lot numbers on them. I was not able to keep the bottles because they were put in the trash. I didn't know I was not getting what the doctor had ordered and the pharmacist was making a substitution. You might need them in the future if you find out there is a recall of the lot for any reason.

                  When will you have your next infusion?

                  Gabriella
                  Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                  Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                  "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                  Comment


                    #10
                    Gabriella -

                    I'm not exactly sure when the next attempt at an infusion is going to be; it has to be run through pre-authorization again with BCBS, being it will be done as an outpatient now rather than in-home. And, the timing of it needs to be on an off-week from my chemo week. So, I may not even start now until April? Ugghhh. When the pre-auth gets approved, I'll be doing it at the oncology center where I get my chemo. The nurses there really know their stuff, we've talked about the IVIg treatment before too. I'm not sure why my Neuro didn't order it this way to begin with?

                    ~ Just2Dance

                    Comment


                      #11
                      Welcome to the board

                      Abby
                      Stand for something or you will fall for anything

                      Comment


                        #12
                        Hydrate, Hydrate, and Hydrate

                        Hi, I happened to remember something else. You may already know this but it is very important to drink lots of water both several days before the infusion and after as well. It helps the nurse to find a good vein and it helps to advoid the headache. Hope the next time goes well and it should go well since the cancer nurse is infusing you.

                        Gabriella
                        Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                        Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                        "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                        Comment


                          #13
                          Privigen

                          H Gabriella,

                          I know this is an older post but am hoping you might reply. I am about to begin privigen for autoimmune mediated nerve pain and am curious about your reaction. What do you mean when you say you were unconscious for 5 hours after the first infusion?

                          Thanks in advance,
                          Natalie

                          Originally posted by Gabriella7 View Post
                          Welcome to the board, I am the resident IVIG guinea pig here. Another member, Linda, had the IVIG treatment for 8 years but is not taking it now. If you read my thread entitled IVIG Infusions you will see what I have been through. All I can tell you is my experience which goes back to June of last year when I was diagnosed with myasthenia gravis in addition to MS. The neuro wanted me on IVIG infusions over 2 years ago but Medicare would not pay for them for MS at that time. When it was found I have MG in April of last year then it was approved. My neuro ordered Gammagard Liguid from the beginning but I found out later the pharmacist was substituting another brand from the formulary which was not working for me.

                          Do you know how high the number for the drip was pushed up to? It has to be started slowly and moved up slowly and I cannot tolerate over 110 or I get a migraine headache. I get a total of 40 gm of Gammagard Liquid and it has to be brand specific and special ordered. It takes about 5 hours for me to get this amount. I go to an Infusion Center which also treats cancer patients. Before the IVIG is started I get liquid Benedryl, Solumedrol 125mg, a small bag of fluids in the IV line and 2 tablets of Tylenol. These are to prevent the reaction that it sounds like you got. You can read my past experiences in the other thread. After being told I was getting one brand of IVIG and finding out I was getting another I made certain to get the name off the bottle as well as the lot number when I had my most recent infusion the end of February.

                          I could not tolerate the Privigen brand of IVIG and ended up in the ER and hospital in January from the side effects as I got severe diarrhea, dehydration, and was unconsious for about 5 hours at home the next day. I refused to get the infusions at home and still refuse to because of the possibility of a serious reaction as I have had anaphylactic shock from an IVP injection. Sorry, this is what brought you here but glad to have the company of another IVIG patient. If you are diabetic you need to have an IVIG brand which does not have any sugar, sucrose, etc. and Gammagard Liquid does not. I have researched the internet and learned a lot about IVIG and would recommend you do also. It is a good drug if it is administered correctly. There are about 9 different brands of IVIG and you might just need a different brand as well as being in a safer environment in case of a reaction. Just my thoughts.......

                          Gabriella

                          Comment


                            #14
                            Originally posted by NatalieB View Post
                            H Gabriella,

                            I know this is an older post but am hoping you might reply. I am about to begin privigen for autoimmune mediated nerve pain and am curious about your reaction. What do you mean when you say you were unconscious for 5 hours after the first infusion?

                            Thanks in advance,
                            Natalie
                            Hi, Natalie, and WELCOME!

                            I'm sorry to say that Gabriella7 hasn't been here since December 2014. Some members here have tried to reach her but so far as I know, nobody knows what has happened to her.

                            If you read among her posts she might have gone into more detail about the episode you're wondering about.
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                            Comment


                              #15
                              Hi Natalie. I get Gammaguard IVIG. I hydrate well day before and day of. I spiked a fever because the center pushed it too fast. Doc had ordered four hours, they did it in 2.5... so doc did an end run and ordered 5-6 hours. This has resulted in no side effects.

                              Btw, I get it at an infusion center. I wouldn't want to do this at home for fear of a bad reaction outside of a controlled monitored situation.

                              Welcome I hope you enjoy your stay.

                              Comment

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