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Hello, My mother has CIDP and has controlled it for 4 years with monthly IVIG treatments (30 grams each treatment).During this time she has consistently walked 1 to 2 miles every day. In October 2012 she missed one treatment and quickly went downhill. She had treatments in November and December but by early January she had deteriorated to the point where she had to be hospitalized because she could not walk or even get out of bed. On Jan 23rd and 24th she was given 2 consecutive treatments of IVIG (50 grams each day). She was also put on Prednisone - 60 mg per day. The IVIG treatment at the higher dose seemed to help and over the following 14 days she began to walk again (with a walker) and walked further each day than the day before. After this, her condition began to slowly weaken again and 4 weeks after the IVIG treatments she was unable to walk again and had to be lifted out of bed. She was given 2 consecutive treatments of 30 grams of IVIG with no improvement. A month later she was given two more treatments of 30 grams of IVIG again with little improvement. We asked her Neurologist why he wouldn't give her 50 grams instead of 30. On April 1st and 2nd she was given 50 grams of IVIG for 2 consecutive days. Now it is April 8th and she is showing some improvement in her hand movement and a little more strength in her legs but she still cannot stand up or walk without assistance. She is still taking 50 mg of Prednisone per day but it seems to have strong side affects (shaking legs and swollen feet). We are looking for the best treatment option for my mother. She was extremely fit and active just a few months ago and now her condition has deteriorated considerably and the treatment she has been receiving has not improved her condition much. She has now been in the hospital for 10 weeks and won't be able to leave until her condition improves. Please help us to find the right treatment for her. Also, do you think that there has been permanent nerve damage while she has been waiting for the right treatment ? Thank youxxxxxxx [email protected]
My mother is in Victoria, B.C. Canada.
The doctors here have not said much. This is the main problem. There is not a lot of action by my mother's neurologist and in 10 weeks he has only shown up in her hospital room 4 or 5 times. We feel like she is being neglected and there has been no interaction with the doctor with the family in spite of repeated attempts to contact him.
Thanks for your advice. Unfortunately, because my mother is Canadian she wouldn't be eligible for coverage in any U.S. hospitals. Otherwise I would love to take her to the Mayo clinic which is one of the best in the world.
The nearest teaching hospital would be in Vancouver B.C. so that is definitely an option to explore.
One thing I would like to ask you though, is about the IVIG treatment. Since she seemed to respond so well to the IVIG wouldn't it make sense to give her more IVIG treatment ? That is, more frequent treatments. At the moment she is only getting treatments once per month and about 2 weeks after receiving the treatments her condition starts to degrade again. So the first 2 weeks are good and then she goes downhill. Given that, wouldn't it make sense to give her the IVIG every 2 weeks so that she can get back on her feet and out of the hospital? I would think it costs more to keep her in the hospital continuously (she has now been there for 10 weeks) than to give her an extra dose of IVIG every 2 weeks and possibly get her out of the hospital.
Any ideas on possible treatment regimes or her prognosis if she doesn't get proper treatment would be greatly appreciated. I'm afraid there will be permanent nerve damage if she doesn't get proper treatment.