Reply To: Anyone with Sensory Predominant CIDP?
CISP is a very rare variant of CIDP and research into it is incomplete at best. However, renown researchers, such as Dr Richard Lewis, have been covering CISP. Here is an article he updated a few weeks ago that includes recognition of the variant:
https://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-etiology-clinical-features-and-diagnosis
The following 2017 case study of CISP treatment has demonstrated that varying IVIg dosage and frequencies can have a favorable effect on treating CISP:
https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-017-0906-2
The half-life of SCIg does not differ appreciably from that of IVIg, and it can be administered at lower dosages and more frequent intervals than IVIg resulting in higher and more stable serum IgG levels, potentially improving efficacy and reducing adverse effects and ‘end-of-dose’ effect (treatment wearing-off before the next dose is due). Patient self-administered dosing is well-tolerated up to 50 grams per week administered in 2-3 injections. Studies of cost-effectiveness and health-related quality of life favor SCIg use in treating CISP.
SCIg is a subcutaneous injection/shot given into the fat layer between the skin and muscle. Many people can administer SCIg themselves; I’m not one of those. I’m overly sensitive to anything puncturing my skin and these shots really stinged me, so I discontinued them. I’ve since had a few other types of subcutaneous shots and tolerated them as long as they were given v e r y slowly. SCIg is discussed here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783
Some other options you may wish to review include – Consider taking Vitamin B12 (Methylcobalamin 5000MCG) and Alpha Lipoic Acid (1200MG) daily to help with peripheral neuropathy while waiting for something other than IVIg/SCIg. These over-the-counter supplements have helped some who have suffered from GBS/CIDP and variants. HSCT is a newer treatment option (still in clinical trials) that has worked for some. You can read more about HSCT here: