October 11, 2017 at 2:33 pm #113392
Hello to all,
I was diagnosed with CIDP 2015. It was a big damaging event. IVIG assisted but I had damage to nerves/axons that is permanent (had to quit working because of the disability).
My question is this? Have any of you experienced smaller relapses that don’t quite build up to the big initial onset or other “big” attacks? I seem to experience “tiny” relapses (some would say, episodes). I’ve had two specialist and they seem helpless or clueless as to what and why? I just want to know if this is common or usual for others diagnosed with CIDP (or variant). I am on my second round of IVIG after this last “event” which seemed to kick in after I ran a low-grade temp with no other symptoms for about 2 days in early Sept. Thank you to anyone with some insight and for sharing. Andra MarieOctober 11, 2017 at 3:23 pm #113393
Why are you not on IVIG routinely for your CIDP? I need to get it every 5 weeks or I have symptoms. I tried to push out to 6 weeks and all the sudden I had weakness, tingling, and other symptoms. Went back to every 5 weeks and I function normally. So I just keep getting the IVIG routinely and don’t have any problems.October 11, 2017 at 6:51 pm #113394
Insurance does not always want to pay $$$$. Staying on it is not always best for every patient. Everyone is different. Second Neurologist is cautious.
IVIG is harsh on kidneys and it’s only helpful with some symptoms and will not repair permanent damage etc.. Thank you. Best wishes.October 12, 2017 at 12:32 am #113395
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.
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