Reply To: CIDP big relapse vs mini relapse?
Although I have had CIDP since 2013, I am only becoming aware of the implications and diverse symptoms of this disease thanks to the Forum. My experience has been that the Neurologists do nothing to enlighten you about the disease because they know so little themselves. “You have blah blah blah and this is what we will prescribe. Have a nice day.” I am on my third Neurologist who finally is on board with learning and seeking proper treatment. I have been cruising on Prednisone all this time and for the most part it has controlled the symptoms and I have been reasonably functional. Fatigue is a separate matter.I have incurred some permanent nerve damage but still get around fairly well. Glad I do not have to work. Helps to be retired. There have been minor flare ups that have been treated by boosting the Prednisone and then lowering the dose gradually. That is until recently. I was experiencing severe pain that started gradually and increased over the course of a week. I contacted my Neuro who fit me in within a couple of days. He immediately boosted Prednisone to 60mg every other day which has helped. Although he prefers Prednisone, he is scheduling me for Home IVig. 5 full days to start and then determine what is necessary after that….assuming all goes well. He has treated patients with IVig not just for CIDP. I informed him of the Foundation and he was grateful for the information. I am standing by waiting to hear if my Insurance approves and when the home treatment will begin. I don’t even want to think about the cost if it is approved. If it works what choice do I have? I have seen information about Subcutaneous IVig which seems interesting. Being alone, this whole experience has turned my life into more than my worst nightmare. Finding the Forum gives me hope and a better understanding of what is happening. Thanks to all Participants in the Forum for your input.