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        • January 8, 2025 at 9:52 am


          ally-attwell

          Keymaster

        • #3980

          My daughter is 24 years old and we are day 133 in hospital. We have an amazing team but they do not know much about CIDP. Is there any chance if my team could contact you for advice? She has a number of conditions but since October her mobility deteriorated she can no longer feel her legs from the knee down, and she has lost function in her fingers. She has seen a lovely neurologist in Palmy and did a nerve conduction test. She had no response in her legs and weak response in her hands. We have done 5 days ivig any other suggestions would be greatly appreciated.

        • February 27, 2025 at 3:35 pm


          Marg

          Keymaster

        • #3989

          To Ally-Arrwell. I could have written your plea for advice as I have same symptoms as your daughter. I had a relapse soon after going home from Burwood hospital rehab ward – just 4 weeks. I am not independent, I am numb from knees down. Did suffer from terrible burning & pain in legs but drug Gabapentin has reduced burning. I have had many falls whereby I drop straight down like lightening and there is no way I can get up. Strength goes from arms, core body and legs. I also have balance issues. My hands are also numb and there are days when I am unable grip anything. I am currently on my second stint in Burwood rehab ward. The relapse has done more damage to the myelin which may or may not recover.. I wish your daughter well and to try and keep positive. Marg L-H Christchurch

        • February 27, 2025 at 3:36 pm


          Marg

          Keymaster

        • #3990

          To Ally-Arrwell. I could have written your plea for advice as I have same symptoms as your daughter. I had a relapse soon after going home from Burwood hospital rehab ward – just 4 weeks. I am not independent, I am numb from knees down. Did suffer from terrible burning & pain in legs but drug Gabapentin has reduced burning. I have had many falls whereby I drop straight down like lightening and there is no way I can get up. Strength goes from arms, core body and legs. I also have balance issues. My hands are also numb and there are days when I am unable grip anything. I am currently on my second stint in Burwood rehab ward. The relapse has done more damage to the myelin which may or may not recover.. I wish your daughter well and to try and keep positive. Marg L-H Christchurch

        • March 2, 2025 at 2:47 pm


          Gareth Parry

          Keymaster

        • #3993

          There are 3 approved treatments for CIDP; steroids like prednisone or methylprednisolone, Immunoglobulin (Ig) either intravenously or subcutaneously and therapeutic plasma exchange, also known as plasmapheresis, although the latter is rarely used. Whether opne of the steroids or Ig is used depends on multiple factors and often comes down to the preference of individual prescribing physicians. Steroids are more convenient to take since they are given by mouth, either daily, on alterant days or once a week but they tend to have more side effects. Ig needs to be given by injection so is less convenient but is preferred by some doctors because there are fewer side effects. There are a number of higher risk treatments that can be effective but are used only when the initially chosen treatment is not optimally effective or has unacceptible side effects. It is important to discuss with your doctor which is the preferred treatment for you based on a careful analysis of risks and benefits.

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