Reply To: Prednisolone making CIDP much worse….?

Hi there – My daughter was one of the few people with CIDP who got worse while on steroids. Her highest dose was 20 mgs a day & she went from relapsing every 12 days to every 9 or 10. We started a slow taper & resumed IVIG & she improved immediately.

I did extensive research on this topic years ago & you are correct that there is research stating that a small portion of CIDP’ers (mainly motor) do get worse with steroids. Here is a link with info on treatments for CIDP:

http://www.medmerits.com/index.php/article/immunotherapy_in_neuromuscular_disorders/P4

The paragraph explaining steroids states: Steroids are widely used for CIDP treatment. However, only 1 randomized, unblinded trial showed effectiveness at 12 weeks (Dyck et al 1982). Many randomized as well as uncontrolled trials and case series suggest that steroids are effective in CIDP treatment (Joint Task Force of the EFNS and the PNS 2010b). A recent randomized trial has suggested similar effectiveness and lower side effects when using pulsed dexamethasone, compared to standard steroid regimens (van Schaik et al 2010). This response is sustained in the long-term in a significant proportion of patients, some of them, as seen with IVIg, evolving to remission (Eftimov et al 2012).

A subset of patients with CIDP, particularly those with pure motor forms of CIDP, may worsen with steroids. This must be considered in case of patient deterioration while on steroid treatment (Mehndiratta and Hughes 2002).

My daughter had pain (numbness & “charlie horses”) and muscle weakness. She also had inflammation on her cranial nerves which caused her right eye to become paralyzed looking in towards her nose. In addition, she had inflammation on her spine from the lower lumbar area down. And she had autonomic nervous involvement – trouble swallowing & terrible digestive issues. Right before she was diagnosed & started on IVIG, she also experienced some urinary incontinence issues.

She was 4 years & 3 months old at the age of diagnosis. She is now almost 12 years old (in a little over a week) and has been off of all treatments for a few months now. We are hoping she has reached “the R word”. (KNOCK ON WOOD!)

Kelly