My wife tried ivig twice and she had an extremely bad reaction. 105 fever for a week and had to be hospitalized. Dr. Thinks it could be because she also has cystic fibrosis. Too bad because the treatments were helping her. Has anyone else had such a bad reaction?
That happened to me two ivig's ago and I spent a week in the hospital and no one has any idea why. It only has happened once in four years so I feel blessed. She is not alone by any means.
I had a stroke from my ivig. Doing well now though.
Ask the brand and see if it has glucose. If it does, try another brand without. Pre-medicate with at least 50mg IV Benadryl and drink a ton of water.
So sorry your wife had a reaction and had to stop IVIG. I had a life threatening extreme reaction and was forced to end IVIG. The antibodies in the IVIG attacked my red blood cells and caused me to have many blood transfusions until those antibodies left my system.
IVIG was a miracle for my symptoms , so ending it was devastating. I am doing monthly Solu medrol treatments that only keep the inflammation under control , but that's it.
I hope another treatment can be used to help your wife. Hang in there !!
I've had one extremely bad reaction that put me in the hospital for a week that may have been IvIgG related, which I attribute to a nurse hurrying the procedure because of an approaching hurricane.
I've had lesser reactions of headache and vomiting, however, the long term benefits of IvIgG (24 months @ 240 grams/ month & Imuran) by far outweigh these side-effects.
Brand is important, yet most courses of treatment for CIDP stipulate Gamunex-C given at a rate to accommodate the patient's weight and possible reactions. Your wife may have encountered a team of infusionists that didn't know the CIDP ropes. Slowly is the keyword... I've had 40 grams give over 8 hours in one day, along with 2 injections of benydryl every 4 hours and Tylenol to the maximum. Boring, boring, boring... but I like to walk and breath and be pain free so I endure the boredom by sleeping through my treatments. I'm convinced that sleeping during infusions keeps my blood pressure at low normal, which facilitates the infusion of 40 grams of heavy proteins (IgG, along with IgM, IgE, Ig? and other impurities).
I would not give up on IvIgG if it seems to work, but lower the dose to the very minimum; a dose that is then increased to a level to mediate the CIDP. Also, ask for supplementary treatment using steroids, PE and/or immume-suppresents. Wife under 65? ask for HSCT. Be proactive, be pushy, read everything about CIDP... CIDP can get very nasty and mean on the body.
I've discovered that neurologists give lots of "maybes", and that is the nature of treatment for CIDP. Every body, everybody is different... and we CIDPers are only a dart board for the neuros aiming for a bull's eye.
BTW- I'm certain I've beat the devil that is this disease (over 20 years of it) by constant and vigorous exercise, even if I have to use a walker, a cane or my wife's loving shoulder to lean on... exercise and/or swimming! CIDP is a motor-neuron disease and that means muscles (at the nerve roots) have gone wonky!
I had an hypertensive crisis from my Gammunex-C in Jan. Haven’t had any since so now I’m a “basket case”. Well enough to restart it this month. As has been pointed by others, there are a ton of bad reactions to IVIg but not all of them really are. Some are from the glucose containing ones, others are reactions from too high a dose or too rapid an infusion rate. As noted elsewhere, there were far less reactions at rates lower than 150 gm/hr. The same is true for non-loading doses of IVIg in the order of 1gm/kg over two to three days. Unfortunately, there are some real and drastic side effects of the infusion in some individuals such as aseptic meningitis, stroke-like symptoms, high fever and rash, kidney failure, etc. So it’s very important that conservative and lower doses and infusion rates be used initially. Good Luck! Don’t give up on IVIg entirely. Have a good talk with your doc and research the heck out the drug websites.
I have been fortunate up to now but it can happen at any time.I have had such benefits i'd want to persist.
akamalaccas said:
I have been fortunate up to now but it can happen at any time.I have had such benefits i'd want to persist.
Bonzo said: Very impressive response from Dazed and Confused - you truely covered it all.
I agree with not giving up on infusions with so many factors involved especially with a diagnosis of cystic fibrosis.
I would certainly have both specialists communicate and determine the "best practice".
With so many brands available and such variations of IGg, etc. I would say keep it at and best to you for all that you do!
akamalaccas said:I have been fortunate up to now but it can happen at any time.I have had such benefits i'd want to persist.
Estaban, long time no talkie. Your comments on exercise motivated me to return to the gym on Sunday to give it a go once more. What the heck, I can only get worse - temporarily!
estaban said:
I’ve had one extremely bad reaction that put me in the hospital for a week that may have been IvIgG related, which I attribute to a nurse hurrying the procedure because of an approaching hurricane.
I’ve had lesser reactions of headache and vomiting, however, the long term benefits of IvIgG (24 months @ 240 grams/ month & Imuran) by far outweigh these side-effects.
Brand is important, yet most courses of treatment for CIDP stipulate Gamunex-C given at a rate to accommodate the patient’s weight and possible reactions. Your wife may have encountered a team of infusionists that didn’t know the CIDP ropes. Slowly is the keyword… I’ve had 40 grams give over 8 hours in one day, along with 2 injections of benydryl every 4 hours and Tylenol to the maximum. Boring, boring, boring… but I like to walk and breath and be pain free so I endure the boredom by sleeping through my treatments. I’m convinced that sleeping during infusions keeps my blood pressure at low normal, which facilitates the infusion of 40 grams of heavy proteins (IgG, along with IgM, IgE, Ig? and other impurities).
I would not give up on IvIgG if it seems to work, but lower the dose to the very minimum; a dose that is then increased to a level to mediate the CIDP. Also, ask for supplementary treatment using steroids, PE and/or immume-suppresents. Wife under 65? ask for HSCT. Be proactive, be pushy, read everything about CIDP… CIDP can get very nasty and mean on the body.
I’ve discovered that neurologists give lots of “maybes”, and that is the nature of treatment for CIDP. Every body, everybody is different… and we CIDPers are only a dart board for the neuros aiming for a bull’s eye.
BTW- I’m certain I’ve beat the devil that is this disease (over 20 years of it) by constant and vigorous exercise, even if I have to use a walker, a cane or my wife’s loving shoulder to lean on… exercise and/or swimming! CIDP is a motor-neuron disease and that means muscles (at the nerve roots) have gone wonky!
Lot of good suggestions here, Charlie. It makes sense to talk with your wife's healthcare team about dosage, brand, speed of delivery, supplementary treatments, and to discuss HSCT. Making a list of questions and going over them with the doctors can be very productive. If the doctors believe that certain treatments or changes are not indicated, politely ask them to share their rationale so that you are better informed. In particular, HSCT is not indicated for everyone. Wishing your wife improvement soon.
hi every one
glad to see i am not the only one with this cidp. sometimes i am so scared but then i read through everything you wrote and i realise
that i am still lucky. thank you so much for all the info and for all the help.
spoke to my neroligist last week thursday/friday and she prescribed prednisone for me to take and i am feeling lots better.
also asked her about the cidp anti inflamitation diet on the internet and want to know does it work. she said there is no diet for this desease. i should go for a low gi and no sugar eating plan.
is there food groups that helps along the inflamation or not.
please advise me on this i really want to know.
RE: “Dr. Thinks it could be because she also has cystic fibrosis.”
As a therapist I worked with many CF patients that seems to get relieve taking a bronchial dilator followed by inhalant NAC “Mucomyst”.
No one has yet looked at doing plasma phoresis then IVIG to prevent rebound but I am hoping it may gain recognition.
Good luck!