CIDP relaps

    • Anonymous
      August 20, 2011 at 10:09 am

      My son (Logan) is 14 and was diagnosed with CIDP at age 4. He received treatments of IVIG from 2001 to 2007. All was great and I hoped we were over this.
      Near the end of June he started getting numbness and tingling in his hands and feet. Logan just received an IVIG on Tuesday and Wednesday and he felt good when we were leaving the hospital but by the time we got home he had an awful headache and other side effects 🙁 . He is reacting completely different to the IVIG then when he was younger. He didn’t have any of the side effects before (tiredness, dizzy, weak, chills, massive headaches and upset stomache) but it seems he is having a very hard time now. He says he is not doing the IVIG again because of the way it makes him feel.
      It is never a good time to deal with this but now it is harder then before due to the fact that he starts high school on Monday and he did start marching band but had to quit because of the weekness and fatigue in his legs. I can see how upset he is about this but he will not talk to me about it:( . He doesn’t want to be treated different but there are somethings he is unable to do and this embarrasses and angers him.
      Does anyone have ideas on how to make this any easier for Logan?

    • Anonymous
      August 20, 2011 at 11:26 am

      Hi Logans Mom,
      I guess he needs to pre-med with benedryl and tylenol or other headache medicine prior to IVIg. That seems to help a lot of people and a slower infusion rate perhaps. Does he drink a lot of water prior to infusion and also during infusion? That helps me. Hope these suggestions work for him. God bless you both! 🙂

    • Anonymous
      August 21, 2011 at 12:19 am

      I agree with Wendy. pre med with tylenol and benadryl. Also drinking plenty of fluids 2 days before makes a big difference.

      I also take tylenol and benadryl for 2 days post IVIG. It really helps me.

      Please try to explain to Logan that IVIG will help him in the long run.

      Enjoy the beginning of the new school year Logan!

    • Anonymous
      August 21, 2011 at 11:34 am

      I agree with the previous comments and assume that the doctor has suggested benedryl and tylenol or other medications to decrease the side effects.

      I suffered severe side effects from IVIg even though I had benedryl (via the IV) and tylenol before and during each treatment.

      An immunologist suggested trying a different brand of Ig. I was using Gamunex. There are a number of different manufacturers. You can find a brand comparion at:


      Different manufacturers using different processes and chemicals and have different levels of IgA and other substances. Also as IVIg is taken from many different individuals, each dose is different and perhaps the side effects will lessen after future treatments.

      Another important factor that I’ve noticed is diet. There’s an excellent book on diet called “Eat to Live” by Dr. Joel Fuhrman who treats autoimmune diseases with diet. It will not cure CIDP but I’ve found that it greatly improves the symptoms.

      Also try to ensure that your son gets enough rest and is not under a lot of stress. Mild exercise, daily walks, good rest, good nutrition will hopefully help.

      Good luck. There’s a lot of research happening and hopefully by the time your son is an adult there might be a cure. If he can take as good care of his health as possible until then to minimize nerve damage there might be a total cure.

      I hope these comments help. Good luck.

      Best regards, William

    • Anonymous
      August 21, 2011 at 11:57 am

      Thank you all very much for your suggestions.
      He was pre-medicated with benedryl and tylenol but I don’t think he drank enough. I will also request that they slow the rate down for his next IVIG.

      I printed off some information for Logan to read now that he understands that this is something he will be living with. I know that he thinks that I dont know what I am talking about (he is at that age that mom doesnt know anything:rolleyes) when it comes to hydrating himself before, during and after but now that he has read up on it I think he understands the importance of it.

      He is doing better today and his headache is almost gone :).

      Again, thank you for your help.


    • Anonymous
      September 1, 2011 at 11:52 am

      I was given a Benadryl 30 minutes before each IVIG treatment. I did have an excruciating headache when they raised the dose, but they gave me something special for the migraine and I did okay after that. They can also control the rate at which he receives the IVIG, maybe you can request for a slower pace? They had to adjust mine a few times.

    • Anonymous
      September 8, 2011 at 4:05 pm

      I feel so badly for everyone who has this and for those who have to suffer the horrible side effects of IVIG. I don’t want to squash your hopes but the side effects you list are real and A very rare side effect is Aseptic Menegitis. (we had this too) My daughter has had to stop IVIG and switch to Plasma Pherisis due to the severe side effects that she has started to receive, we premedicate; Benedryl, Ibuprofen, Tylenol , IVsaline (they told us the headache was caused by not enough fluid so hydrate her), we adjusted the dose, changed the drip rate. None of this worked… She went 2 years with on and off again side effects after treatment, but the side effects are so severe now she was hospitalized the last 2 treatments because they were so bad. I hope and pray for a miracle one of these days. There are pharmaceutical companies out there doing new clinical trials and I have hope… (my SO works for one and shows me the new studies he finds). If anyone has any new ideas other than what is listed here for side effects please post… We are going for our first PP 10/7 and we are both very scared.

    • Anonymous
      September 9, 2011 at 2:37 pm

      I was not prone to headaches until I had my first IVIG treatment about a year ago. I even had the standard Tylenol/Benadryl pre-med, but I was not able to function for 1-4 days after each treatment. I also hydrated before each treatment. In the infusion center I noticed that other patients were getting small bags before the IVIG. I asked about it and was told that it as for the side effects. Then, I asked the doctor to give me a similar regimen. Guess what!!!
      No more headaches, in fact I felt great the next day after IVIG. The type of IVIG is Gamunex. I am now receiving by IV a small bag of Reglan (for nausea) and a small bag of Decadron (for headache) before the IVIG. I also still receive the Tylenol and Benadryl, and also drink lots of fluids. I am thankful that I asked the doctor to add the pre-med IVs. Please ask Logan’s doctor about trying this combination. It might be worth it.