Reply To: Prognosis for Treatment-Refractory CIDP
I am sorry to read about your mother’s condition. There are other treatment options available.
For example, “In intractable cases high-dose cyclophosphamide has been shown to be effective [Gladstone et al. 2007, 2005; Brannagan et al. 2002]. We prefer an initial pulse of three cycles at 350 mg/m2 body surface followed by 600 mg/m2 body surface at an interval of every 6–8 weeks..”
Here: http://jnnp.bmj.com/content/76/8/1115.full
For more treatment options please refer to this website: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/
If you did a search using each of the treatment methods above on this website’s search feature I am confident you will find someone who has talked about the method in the past.
A small measure of comfort in this data- “The 2007 GBS/CIDP Outcomes Survey indicated that over the last three decades the care of CIDP has improved the overall outcome. The mortality rate has decreased to 1.3 % and patients are less likely to be confined to a wheelchair (7 %). The proportion of patients who recovered or are independent while on treatment has increased remarkably to 31 %. Despite these improvements due to immunotherapy, the majority of cases remain to have some degree of disability with 28 % requiring an assistive device to ambulate (Koski L, 2007 CIDP Outcomes Survey, personal communication).”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987657/
“Conclusions- The long term prognosis of CIDP patients was generally favourable, but 39% of patients still required immune treatments and 13% had severe disabilities. Mode of onset, distribution of symptoms, and electrophysiological characteristics may be prognostic factors for predicting a favourable outcome.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117396/
Here is another source of information: “When a patient does not respond to or cannot tolerate the first-line agents, other medications may prove beneficial. Azathioprine, cyclophosphamide, cyclosporine, interferon-alpha, interferon-beta, mycophenolate mofetil, and methotrexate have all been reported to be beneficial in CIDP patients not responsive to initial therapies.”
Pull up a chair to read this one- just as with your post ( a joke, please smile!)