AnonymousJuly 13, 2013 at 4:16 pm
I have been diagnosed with CIDP by two Neurologists in NYC who specialize in this. I am about to undergo IVIG treatment. However, looking at the Gamunex website, I am concerned that some of the side effects are worse than the disease. Has anyone gone through this with major side effects?
July 13, 2013 at 5:02 pm
Every medication comes with a long list of side effects, including some which are not established but only very loosely associated. This is done out of an abundance of caution and for legal reasons. Most people who receive IvIg do not have serious side effects. I had none at all. Some of the side effects which people have reported here can be lessened by reducing the infusion rate, or by other means. You might find some discussion of this by looking back through the forum.
As for side effects being worse than the disease, that is not likely, but depends on the particular case. For an extremely mild case of CIDP, perhaps, but a severe case of CIDP can be seriously debilitating, indeed. Mine put me in the hospital for four months, much of that in paralysis, and with other side effects that were worse than the disease itself. CIDP is nothing to take lightly. Get the best treatment you can.
And by the way, earlier treatment generally leads to better recovery.
July 13, 2013 at 7:18 pm
The length of time to diagnose suggests that it has been slowly progrssing. Hopefully, IvIg will control it.
AnonymousJuly 23, 2013 at 11:50 pm
GET THE IVIG TREATMENT ASAP!
It took many visits to six neurologists over three years before almost by luck I was tested by one who knew about CIDP and its symptoms. Up to that point I had been told for example “to take a holiday” or don’t worry “some people are just like that”. Even now as a CIDP patient I am told “my (test result) symptoms are mild” and certainly many others are far worse off than I. But in mid-2013 I have developed new unsettling breathing problems to add to earlier issues that crept up on me over about five years: I myself do not see the symptoms as mild as they now seriously impact my daily living!
I have recently started a second six month round of IVIG and will track the results on my own website CIDPlog.com
September 2, 2013 at 2:31 pm
Marlon, IvIg does not restore any nerves. Its purpose is to reduce or eliminate the attack on the nerves. When the attack is stopped, the nerves can heal through the natural processes of healing in the body. Nerve healing may not be complete, however. The completeness of the healing depends on the nature and extent of the nerve damage.
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