• April 10, 2017 at 9:10 am

      Do the awful IVIG headaches go on happening forever, or do you reach a point where they ease off?

    • B
      April 10, 2017 at 3:25 pm

      Sandra, I am currently sitting in my 3rd monthly maintenance dose after the loading dose in December. I had severe migraines with the loading dose but only standard headaches with the subsequent doses. And I can manage the headaches fairly well by alternating ibuprofen and acetaminophen. I also take Benadryl and my infusion rate has been slowed. Takes about 6-7 hours for 70g.

    • April 11, 2017 at 11:15 am

      Only 6-7 hours for 70 grams is very fast, and a big dose. i thought 5 to 6 grams per day was the most any patient could tolerate. My daily infusions, the time the fluid is actually going in, last three and a half hours each.

      My headaches start with the third day (of 5 days) of infusion) and last for three days after I finish. I also have nausea and barely eat anything on those days. My veins are small and have trouble holding a needle (it can’t be left in overnight) so the nurse has had to change the needle at least once each day. This past Friday, I needed 5 changes to different veins. I have painful bruises on both arms. Sometimes I wonder if it’s all worthwhile, then I remember that the alternative is being crippled for life.

      Have you felt much benefit yet?

      Thanks for your response– I want all the info I can get, and it’s hard to come by.


    • April 11, 2017 at 3:22 pm

      I meant 4-5 grams for minute.

    • April 11, 2017 at 4:33 pm

      Obviously I’m confused and need help understanding all this! I can’t get any detailed answers from my neurologist, ao I’m left feeling ignorant and more than a little bewildered. I can’t even get answers about how my primary immune defiency — hypogammaglobulinemia — figures into all this. Maybe an immunologist will be more forthcoming.

    • B
      April 11, 2017 at 4:33 pm


      My understanding is that a standard protocol for IVIG is 2g/kg over 3-4 days for the loading dose and 1g/kg over 1-2 days for the maintenance doses. Given my weight, 65-70 g is appropriate. I’m only one day out, but I’m currently headache-free after yesterday’s maintenance dose.

      My neurologist said that I need to receive IVIG for 6 months before really evaluating if it works. But I keep a daily spreadsheet of symptoms, and while self-reported and subjective, I do think that it is helping. My bad days aren’t as bad and my good days are better. And objectively, my chronically elevated WBC came down to normal and my elevated CRP cut in half (after just the loading dose).

    • B
      April 11, 2017 at 4:37 pm

      Sandra, it seems our posts crossed paths. I hope you see the one I just sent.

      Your neurologist should be answering your questions to the point that you aren’t confused. Perhaps call his/her nurse or medical assistant to see if s/he can help with more information before your next appointment. And perhaps bring a family member or friend to your next appointment since four ears will hear more than two. I’ve brought my husband to some and my father-in-law (an MD) to another. It helps rehash things. I also bring written questions to my appointments and take notes during and after the appointments. Good luck with your journey!

    • April 11, 2017 at 9:27 pm

      You’re right about the amount, of course. I’m under so much stress, with neuropathy, persistent pain from serious spine fractures in late 2015, plus a very sick cat I can’t bear to lose, that I have trouble keeping anything straight. I retrieved my copy of my neurologist’s prescription from my ever-growing neuropathy file. I’m getting 25 grams of gamma each day for 5 days, every 4 weeks — a total of 125 grams per cycle — so I’m actually getting more than you. My doctor said he wanted to treat it aggressively because I have such a severe case and so much nerve damage in my legs already.

      The first cycle of infusions took away the terrible stabbing nerve pains in my legs. It was so bad that my legs would fold under me and I atruggled not to fall. Seven days after I finished infusions, I waited for the pain — I was always on guard because of the danger of falling — but it never came. And it hasn’t returned. This time, I feel a little more strength in my ankles. I want my energy and balance back, but I’m afraid my balance won’t return.

    • April 11, 2017 at 9:52 pm

      I agree that my neurologist should be answering my questions, and I’m more frustrated about it every time I talk to him. My husband goes with me every time and has no better luck — even though he spent his entire adult working life as a political journalist! I guess as long as the neurologist is giving me the right treatment, he’s no worse than 99% of doctors. At least he diagnosed me correctly, and quickly, after I’d spent a year and a half getting worse and worse while my pain doctor told me my problem was simple deconditioning and I just needed more exercise. I am going to see an immunologist, though. BTW, my neurologist also says it will take months to get an accurate evaluation of the GG’s effect.

    • B
      April 11, 2017 at 11:00 pm


      I found a PT practice that specializes in neuro disorders. They are great and understand the issues we face. I do strength exercises based on their evaluation of all of my muscle groups and where I am weak. And during my most recent (and fourth) session, they started adding in several balance exercises. They explained that balance is sensory, visual and vestibular (ear). They can’t correct sensory, and presumably visual is ok — but they can help fine tune the vestibular system to help with balance. Perhaps there is a similar practice in your area?

    • April 12, 2017 at 12:23 am

      I don’t know of one. I’ve been looking. I’m in the Washington, DC area. Could you ask your therapist if she knows anyone with the same training she has who works around here? Maybe she has tips for how to find someone? How did you find your therapist?

    • B
      April 12, 2017 at 2:45 pm


      I recommend that you google “Washington DC neuro pt”. I few results came up. I would also ask your neurologist’s office. You could call the MS Society in your area since the PT needs are similar and that is a much more common disease. And if you write the contact info on this page, they can put you in touch with a local CIDP chapter in your area, if there is on. And lastly, have you looking into the “Centers for Excellence” on this site? The foundation has identified doctors who specialize in CIDP and you’re lucky to have one at Johns Hopkins nearby.

    • April 13, 2017 at 10:05 pm

      My first guess is that the infusion rate is too fast. I get 30g, 300mL which takes 4 hours, Two consecutive days a week for two weeks. One week off then repeat. At first I got it three consecutive days a week but we have been able to get it down to 2 days a week.

      My first CIDP doctor, Dr. King Engel (Google him) is an internationally respected doctor for neuromuscular diseases believes that slower transfusions, which tend to prevent headaches, also are more effective in treating the disease.

      I can say that, in 9 years of treatment so far I have never had a headache. Plus, we have been successful in preventing things from getting worse.
      Tell them to slow it down.

    • April 13, 2017 at 10:14 pm

      I’m getting IVIG for three hours each day, five days a week. You’re getting yours in just two days a week? I don’t know what’s faster and what’s slower. For me, it seems to take a lot of time out of each month.

    • April 13, 2017 at 10:19 pm

      And I am definitely being helped. The first five-day treatment took away all of the terrible, stabbing nerve pain down my legs. It hasn’t returned. A headache, even a bad one, was a small price to pay for that blessing. This month, I’m feeling a return of strength in my legs. At this point, I’m no longer giving headache relief priority. Maybe later, after I’ve achieved more mobility and strength, I’ll be more willing to slow it down to get rid of the headaches.

    • May 2, 2017 at 2:32 pm

      I saw my neurologist this morning, and I’m happy to say he’s changing my infusion schedule to Monday & Thursday, Monday & Thursday, Monday, to prevent headaches. Last month after 5 straight days I was in so much pain and felt so sick that I could barely move for a week following the 5th infusion. I think spacing them out and maybe slowing down the infusions will help a lot. I start MondY. Wish me luck!