IVIG protocol at Hopkins
I also had a lumbar puncture at Hopkins, but declined the sural nerve biopsy. The lumbar puncture was performed by one of the senior residents who, according to my doctor, did a dozen or more a day on a regular basis and had far steadier hands. Indeed he did. The lumbar puncture was painless, and I took it easy for the rest of the day. I followed strictly their post-puncture recommendations and suffered no adverse effects at all. Lucky perhaps, or maybe the senior resident was as good as advertised.
With respect to the IVIG, my loading dose was 2 gm/kg of body weight, divided into 5 doses and given on five consecutive days. This was all done at the outpatient floor of the Hopkins cancer center because, as my neurologist told me, they were by far the best at Hopkins in performing infusions. I was very much impressed by the professionalism and care at all times throughout the process. I suffered mild headaches on two of the 5 days. I started the loading dose treatment on a Monday, and concluded that Friday. I did all my infusions as an outpatient because I live only 30 minutes from Hopkins.
Thereafter, I received 1 gm/kg of body weight every three weeks thereafter. After mentioning the headaches to my neurologist, he made a comment to the effect that, “well, we’ll take care of that.” Thereafter, in addition to the premedication with benedryl and tylenol, I also received, via IV, premedication with 20 mg of decadron (dexamethasone).
Hopkins also does something else most interesting with the administration of IVIG. They co-administer a saline solution. I usually used up a 200 gram (I hope I remember these numbers correctly) bag of saline, sometimes more, during the infusion. This was the large bag. So, for each infusion there was the bottle of IVIG and the saline bag, and two infusion pumps regulating each.
In addition, Hopkins started the infusion very, very slowly, and ramped it up in 5 stages. Stages 1 & 2 were 30 minutes each, stages 3 & 4 were an hour each, and stage 5 was until the infusion was completed. I believe that they doubled the rate when they moved from one stage to the other. I believe the maximum rate at stage 5 was around 188. So, as a 175 man, the infusions were about 80 grams of IVIG, and they took 6-7 hours. I always took plenty of reading material, and sat in a nice, comfortable chair, and read throughout the day. I brought a sandwich for lunch and a friend just in case I encountered a problem with the drive home. I also enjoyed a generous cup of chocolate ice cream from a shop in the building’s lobby for desert. After around 15 months of IVIG treatment, my recovery was excellent and my doctor lengthened the interval to 4 weeks for several months, and then the amount of the infusion was progressively decreased until we stopped the infusions quite two years after we began.
At my first visit for the loading dose, the charge nurse printed out for me the Hopkins protocol for administering IVIG. It was 12 pages long, and quite detailed. Apparently, because the Hopkins infusion center primarily treats cancer patients, they have very detailed protocols for the administration of all their drugs, and they strive to control adverse reactions in every way reasonably possible. Counter to what most people have said on this forum, I never made any effort to drink extra fluids or do any other preparation for my infusions. I do believe that the co-administration of saline along with the IVIG, pre-medication with decadron, and slow and steady ramping up of the speed of administration of the IVIG were major reasons that I never encountered any problem whatsoever, except for those two mild headaches during the initial loading dose.
I may also be different from many in that the results of my treatment were truly exceptional, although it was not until after the second treatment following my loading dose that I started to notice improvement. After that, improvement was rapid. It has now been two years since my last infusion. I am physically extremely active, have full strength, exercise regularly, and travel a lot. I have also developed a fine friendship with my doctor, and we get together for dinner once every 4-6 weeks. Yes, we do talk about CIDP, treatments, research, and the fact that he sees so many patients who have been misdiagnosed. He is one of the doctors on the leading edge of treating this terrible disease. Again, I must emphasize that everyone is different, and people react to treatments differently. I may simply be lucky in that I responded well to treatment with no adverse effects, and I am sure I am lucky that in my search for a diagnosis for hellish symptoms finally brought me to Hopkins. I certainly was impressed by everyone at Hopkins, and in the general care they provide to their patients. Of course, not everyone may agree with that view either. These are some of the reasons I strongly recommend Hopkins to others.
I hope this helps. If you would like further information, may I suggest a PM.