pain after IVIG

    • Anonymous
      July 10, 2007 at 8:00 pm

      I haven’t visited this site in quite awhile so I thought I’d check in.

      My 16-year-old son, Adam, was diagnosed with CIDP in June 2005, so we have both had a lot of experience with the ups & downs of this “condition”.

      Adam’s symptoms are under control now with the help of IVIG treatments every 3 months. Unfortunately, he is in extreme pain for 3-4 days after his treatments. His headaches and vomiting are very intense. Has anyone else had this problem, and if so, has anyone found a way to manage it??

      Adam does not suffer from “flu-like symptoms”, he is in such intense agony that he cries and screams and is often unaware of things going on around him. Adam has a history of migraines, but they are nothing compared to this.

      His neurologists have prescribed nausea medications and Amitriptiline, but they are really not any help. His regular pediatrician continually says to wait & see how he does after the next treatment, but after the pain starts he doesn’t have the strength to sit in another waiting room. Before his last treatment I talked to his pediatrician about prescribing something for his pain in advance. She said that there was nothing else he could take and that this was just something he would have to live with!

      It has gotten to the point that Adam feels he would rather live with the CIDP symptoms than with the pain of the treatments.

      (by the way, Adam has been on steroids with no success-and we have tried to go for longer periods of time between IVIG treatments, but 3 months seem to be his limit. We have also changed neurologists and hospitals, but nothing has changed.)

    • Anonymous
      July 19, 2007 at 7:34 pm

      I’m glad no one else seems to have experienced these side effects to IVIG.

      I guess my son will just have to suffer, since nobody seems to have any answers for these problems.

    • July 19, 2007 at 7:59 pm

      Kim,

      This is Dawn Kevies mom. We spoke on the phone. As I mentioned, Kevie DID have pain for 2-3 days after. We also would get a whole body rash. I did notice that when we changed compositions, (liquid instead of the powder) the affects were a bit improved. I also decided to continue the pre meds for 3 days afterwards. This seemed to help a little, but I am not going to lie and say it was gone, because it was not. We also have a very slow flo rate, no higher than 50, starting at 12, working our way up to 50. There was a total of 95g 7 3/4 hours per day for three days. Fluids also are important as many write on the site, before during and after, but I could never get Kevie to drink a whole lot. Maybe that could help!

      I did contact Gammaguard and in their literature it does say that children are more prone to a post reaction. Sorry you have not had any replies, I am sure others will answer shortly! Good luck!!

      Dawn Kevies mom 😮

    • July 19, 2007 at 11:25 pm

      Kim,

      I thought of another reason you may not have had responses, people usually check the main forum. I usually never check this forum, but today I did. Repost on the main forum and I am sure everyone will respond quickly!
      Dawn Kevies mom

    • Anonymous
      July 20, 2007 at 2:56 am

      kim,

      ditto all dawn says. a small percentage do not tolerate ivig well. also if the ivig is so terrible for him, have you considered plasmapheresis? if steroids do not help, i suggest he be tapered off them. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 20, 2007 at 2:16 pm

      Kim,

      Dawn emailed me to let me know you had posted here. Im sorry I never check here, I really should do it more often.

      I had GBS at age 18 and was treated with Plasmapharesis, it really worked for me – IVIg wasnt an option back then. During treatments, my bloodpressure did fall drastically, and a few other things happened, but to be honest it was so long ago I cant remember what all. Had I been able to communicate during the sessions, I believe it would have been smoother sailing, but all in all it wasnt an awful experience, and the discomfort only lasted the length of the treatment. I know some adults who have bad reactions to IVIg, and I can quite understand why Adam would rather not have IVIg anymore. Knowing how Adam suffers afterward, what have the doctors suggestions been regarding the possiblity of PP? I cant say I’m shocked at the pediatrician’s lack sympathy, unfortunately nothing shocks me anymore when it comes to certain doctors reactions – how quickly their tune would change if they or one of their family members had to go through the same thing!

      I am with Dawn and Gene, Adam must certainly be allergic to the IVIg, what other explanation could there be for the reaction. I wonder if someone came in with shellfish poisoning, or a bee sting, and they couldnt breath ……. would these same doctors suggest that the person keep eating shellfish, or become a bee keeper?

    • Anonymous
      July 20, 2007 at 5:07 pm

      Thanks…The only treatments that have been suggested for Adam have been the steroids, cyclosporin, & of course IVIG.

      Adam will be seeing his neurologist in August (actually the week after his next treatment) & I will be sure to ask about alternative treatments.

      I never realized his side effects could mean he’s allergic to IVIG. I’ll definitely look into this.

    • Anonymous
      July 21, 2007 at 2:52 pm

      Hello Kim,
      If Adam’s doctor feels that IVIG is the best treatment, it might be just the BRAND that he is reacting to. A different brand could be tried to see how he reacts to that, otherwise do look into PlasmaPherisis for him. I was told that PP works the same but is just an alternative when you have a severe reaction to IVIG.

    • Anonymous
      July 22, 2007 at 12:33 pm

      Hi Kim,

      We haven’t experienced these issues with IVIG, but can tell you that plasmapheresis worked really well for my husband. Adam will remain in my prayers! I too have a 16 year old son, and I know how you feel to watch him suffer. You too will be in my prayers.

    • Anonymous
      July 23, 2007 at 11:11 am

      Does he get the premixed IVIG or is the powdered form that has to be mixed by the infusion nurse?

      The powdered form has a higher rate of people having problems with it. If it’s not mixed properly many people get the flu like side effects from it. I think it might have something to do with not only the mixing quality but also the air bubbles. The more air bubbles that get into it the rougher the ride afterwards. That’s what my daughter’s nurse says anyway.

      What brand of IVIG does he get? Gammaguard is a usually recommended to kids because it is more processed & seems to have less side effects.

      It could also be his flow rate. I would suggest slowing it down a bit to see if that helps.

      Remember if you aren’t getting the care that you want from your currents dr’s that it’s OK to find new ones. You don’t HAVE to stay with them.

      Good luck.
      Kelly

    • Anonymous
      July 23, 2007 at 1:41 pm

      Kim,
      I hope all the responses are helpful to you. It sounds like you son’s getting aseptic meningitis, which unfortunatly is a possible side effect of IVIG. It’s benign, but painful. It could be a number of thiings:

      Type of IVIG: many have talked about the powder form, but I haven’t heard anything good about it. I get Flebogamma, which is premixed and sucrose-free. The sucrose, which is in many brands of IVIG, could itself be a problem.

      Also, the rate: try having them slow it way down. Or consider getting the same dose over 2 days instead of 1.

      Premeds: be sure he’s getting Benedryl and Tylenol before the treatments. I also find it helpful to continue these meds for at least the rest of the day I have my infusions.

      Plasmapherisis is more invasive but works for many people who either can’t take IVIG or don’t respond to it.

      Please keep seeking answers. Living with these symptoms and possibly having them progress over time is not the answer. I know — I was in denial for a long time about this disease and was practically disabled by the time I got treated a year ago.

      Your neurologist should be willing to talk to you about different brands or infusion rates BEFORE the next treatment. Your son shouldn’t have to suffer to be well.

      Caryn

    • Anonymous
      July 23, 2007 at 7:31 pm

      Hi,
      I have been getting infusions for 6 years now; I started out getting them every 5 months, and I am up to every 2 and 1/2 weeks now. I have developed allergic reactions to many brands of IVIG after I am on them for awhile, and then have to change to another newer brand. I also have learned to be pre- treated with Solumedrol and Atarax, and Zantac, and have continuous IV fluids during the entire infusion. I also need to take vicodan as needed for the terrible headaches, for the next couple of days. The rate of infusion is also critical! I have learned to be my own advocate, and watch the machine; to make sure they don’t try to rush the procedure too fast… this alone makes a huge difference in how I feel afterwards.
      I have learned the painful way to ask every time what brand they are giving me, keep a log, and take an active role in managing my treatment.
      You will need to change and adjust your son’s treatment until he feels the the treatments are helping him, not making him feel worse!
      Best of luck, Jo Marie

    • Anonymous
      July 23, 2007 at 7:31 pm

      Hi,
      I have been getting infusions for 6 years now; I started out getting them every 5 months, and I am up to every 2 and 1/2 weeks now. I have developed allergic reactions to many brands of IVIG after I am on them for awhile, and then have to change to another newer brand. I also have learned to be pre- treated with Solumedrol and Atarax, and Zantac, and have continuous IV fluids during the entire infusion. I also need to take vicodan as needed for the terrible headaches, for the next couple of days. The rate of infusion is also critical! I have learned to be my own advocate, and watch the machine; to make sure they don’t try to rush the procedure too fast… this alone makes a huge difference in how I feel afterwards.
      I have learned the painful way to ask every time what brand they are giving me, keep a log, and take an active role in managing my treatment.
      You will need to change and adjust your son’s treatment until he feels the the treatments are helping him, not making him feel worse!
      Best of luck, Jo Marie

    • Anonymous
      July 25, 2007 at 2:24 am

      Kim,

      I have had side-effects many times from IVIG, if his are that serious then you need to tell the Dr. so you can try a different brand. It makes all the difference in the world. Pre-med with Tylenol and Benadryl is a must I have found. I think you still have my number, call or email me anytime if I can help. Take care, hope Adam feels better.

      Jerimy

    • Anonymous
      July 28, 2007 at 6:31 pm

      Caryn,

      His treatments are spread over 2 days and the rates are pretty slow–it takes an average of 8 hours and the nurses say most patients are finished in half that time.

      I am going to talk to the neurologist about the brands–maybe that is something. He used to get his treatments at TC Thompson’s Children’s Hospital in Chattanooga (which was fantastic!) and the side effects seemed less severe. Because of some Medicaid hassles he now gets them at our local rinky-dink hospital. I think he gets different brands each time–sometimes the IVIG is in 6 bottles, sometimes in 12 little bottles. He seemed to tolerate the one BIG bottle he always had at TC Thompson’s much better.

      He gets the tylenol & benadryl premeds (they actually had never heard of that at our hospital–good thing I was attentive to this or he wouldn’t have even gotten the benadryl!) i also give him Tylenol before we leave the hospital every day but it just doesn’t seem to help.

      Thank you to everyone for your suggestions–this definitely gives me a starting point for our next neurologist appointment.

      Kim

    • July 28, 2007 at 9:28 pm

      Hi Kim,
      Kevin had his treatments over 3 days with a maximum flo rate of 50. Gammaguard liquid is supposed to be the easiest to tolerate, especially for children. Besides the benadryl and tylenol, we also use zofran for the nausea. The last infusion we had, we continued the pre meds around the clock and 24 hours post. It seemed to help, but not totally. I am glad you had some responses that helped you! Good luck with the next infusion!

      one other thing, you mentioned a rinky dink hospital, does your insurance allow for home infusion? It was so much easier for Kevin and the whole family doing it at home. Usually the insurance is happy because the cost is so much less than the hospital. Some of the agencies in Illinois may be nationwide, the one we really loved was Coram, I also have heard wonderful things about angels at home. Also, start keeping track of the name of the ivig and the lot numbers used each time. There are stickers that come off the bottles. It is always good to have them in case of reaction, recall or just as a reference as to which brand worked best for your son. Again, Good Luck!!!!

      Dawn Kevies mom 😮

    • Anonymous
      August 7, 2007 at 9:35 pm

      Adam has always gotten gammaguard–premixed.

      He finished his latest treatment of IVIG today. We pushed fluids, continued the premed of tylenol & benadryl, and basically tried to take everyone’s advice.

      As I write this, Adam is in his room with a terrible headache and he has thrown up 5 times in the last hour. His appointment with the neuro is Monday–I have some new treatments to discuss with him. (I brought them up in a post in the CIDP forum today) It looks like we’re just going to have to do something different.

      Thanks for all your support & encouragement.

      Kim

    • Anonymous
      August 7, 2007 at 10:38 pm

      Kim,

      I’m so sorry that the same thing is happening yet again. All I can say is that I hope that some of the posts have helped you in some way in realizing that this particular IVIg treatment is probably not the right one. I know and understand that this is all so frustrating not to mention intimidating in a way. Please know that we are thinking of you, and all the best with your neuro visit.

    • Anonymous
      August 19, 2007 at 11:20 pm

      I have a 3 year old with cidp.

      If I were you, I would post things on the adult area. There are not a lot of ppl. that come to the children’s forums.

      Good luck, I hope things turn around soon for him.
      Love, Lori

    • Anonymous
      August 20, 2007 at 1:06 am

      Kim………..I’m so sorry Adam is in so much pain, and for you also, for having to suffer through this with him. There are few things more painful than having to watch your child suffer. I don’t have CIDP, just GBS. I did get plasma pheresis, and it worked very well for me with minimal discomfort. I just wanted you to know I was thinking of you and your family, and will keep you in my prayers. Please post again soon, and let us know how you and Adam are doing.