My dad has been diagnosed with CIDP. We had our first IVIG treatment in May and he was sent to a rehab. He had started walking with a walker and was doing great. Our problem came when no follow up IVIG treament were done. Within 2 months he became a complete invalid. We are now doing IVIG every three weeks. He is slowly gaining some leg movement, but no control over arma and legs. Just needing some encouragement on time frames and gaining back some strength.
Hey Darla,
First of all it's so great that your dad has such a wonderful advocate in you! That's so important to his success.
His relapse is more than likely absolutely related to the lapse in treatment. A routine dose is necessary for success of the treatments but it's wonderful that he experienced initial relief with the treatment. I went three nearly months between my initial load dose and my second load dose and I definitely regressed greatly in that time. He will slowly but surely show progress if he maintains his schedule. I was bed bound in December, and then by May I was on a cane and by August I was back to walking unassisted for the most part. Now after 1.5 years of treatment I'm doing very well despite my first relapse due to a rushed taper of my dose. It will definitely take some time for his body to adjust to the dose, the introduction of the new antibodies, and for his body to regain some strength after such a long battle against itself. best of luck to you both!
I so appreciate your encouragement! He is currently in a rehab, but we are terrified they are going to try to send him home. My mother is not able to take care of him alone in his current condition. Hoping he gets strong enough for an acute care rehab. and that a nursing home doesn't have to be an option. It is so helpful to hear from people who have been there. I am so glad to hear that you are now walking. That is fantastic!
Kelly said:
Hey Darla,
First of all it's so great that your dad has such a wonderful advocate in you! That's so important to his success.
His relapse is more than likely absolutely related to the lapse in treatment. A routine dose is necessary for success of the treatments but it's wonderful that he experienced initial relief with the treatment. I went three nearly months between my initial load dose and my second load dose and I definitely regressed greatly in that time. He will slowly but surely show progress if he maintains his schedule. I was bed bound in December, and then by May I was on a cane and by August I was back to walking unassisted for the most part. Now after 1.5 years of treatment I'm doing very well despite my first relapse due to a rushed taper of my dose. It will definitely take some time for his body to adjust to the dose, the introduction of the new antibodies, and for his body to regain some strength after such a long battle against itself. best of luck to you both!
He is still on loading doses. Today they actually had him weight bearing and all the therapists were so impressed at his marked strength. I so appreciate the encouragement, as this has felt like a sometimes hopeless situation.
That is wonderful to hear :) all of the best to you both! IVIG has been a miracle for me I'm always so thankful to hear success stories as I know how awful and isolating this disease can be.
Darla said:
He is still on loading doses. Today they actually had him weight bearing and all the therapists were so impressed at his marked strength. I so appreciate the encouragement, as this has felt like a sometimes hopeless situation.
I am wondering if your dad continued t improve? We are in the exact same boat. He has had improvements in arms/legs but is still unable to use hands/feet.