Just getting started
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March 26, 2011 at 12:34 pm
Well I have finally found some people who are or have experienced the things I am going through. I have enjoyed reading your cases and they have helped me tremendously. I still have questions.
I was diagnosed in July of 2010 with CIDP. I had problems with my calves at first and then I lost most of my strength. I started ivig in September with two large doses, one in September and one six weeks later along with the steroids. The second ivig gave me a terrible headache so we quit doing it and just did the steroids. That didn’t work. I went back on ivig in January on a 3 week schedule. It seems to be working some. I have a few good days and a lot of frustrating ones. I seem to have a milder case of CIDP because I can walk and function most of the time, but by about noon each day I become very fatigued and my legs and feet begin to hurt enough that I don’t want to stand on them. I also have the hot needle pokes in my feet during the evening. I teach school so it gets a little cumbersome at times. I am frustrated beyond anything I have felt before. I hope these treatments eventually start to work and I can put this behind me. I sleep a lot! I am thankful that I found this site so I can read about how others struggle with this frustrating disease. -
March 26, 2011 at 4:06 pm
my 14 y/o get really tired at school around noon too!! Anyway, glad you found the site. It takes a while til you find out what treatment plan will work for you. For the pain you can get lyrica, but there is weight gain. Some use neurotnin, but it may make you sleepy in the begining, maybe wait till vacation so you can adjust yourself on it. About the ivig, it is not uncommon to get sick especially the first time. We used to get sick EVERY time for 4 days post treatment. Now instead of a 4 day dose, we split it up and do it every two weeks. That helps with the symptoms. What size dose are you geting? Some people do not do well with the steroids, others do. Howver, it is not something you can take longterm because of the side effects. Are you getting 2g/kg of weight, or 1g/kg? Three weeks may be too long for you, 2 weeks might be a better option, unfortunateley, there is no set rule and everything is pretty much trial and error till you find the amount of ivig that works best for you. Ask about the lyrica, it could really help with the leg issue.
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March 27, 2011 at 5:30 pm
Hey, thanks a lot for responding!
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March 27, 2011 at 5:33 pm
Hey, thanks a lot for responding! I am slowly figuring out that there are no definitive answers and each person has to be in control of their treatments. I believe my neurologist has done a great job but it is now up to me to yell and scream when I think things need to change. I hope your child is doing well with all that goes with this stinky disease. I am also starting to get over the shock of even having it. It has altered my life enough that I am really having to get my mind right to accept. Oh well, I guess there are worse things. Thanks again and have a great day! Paul
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March 28, 2011 at 12:07 am
I am 9 years into a severe case of CIDP & also used to be a high school teacher until I came down with this. Definitely try Neurontin or Lyrica for the pain, I couldn’t live without it. And yes, there are worse things one can get; but I do believe the hardest part of this illness is that it is forever, one cannot truly beat it. As for the sleep & fatigue part, I still haven’t figured that one out. I do know that the sun helps me a lot, so we just bought a condo in Florida to spend winters there.. Kind of an expensive trial, I guess, LOL!
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