Auto-immune Disease?

Anyone suffering from an Auto-immune Disease called Pemphigus?


How long have you been dealing with it?


What meds are or have you been on?


Are you in remission?





Any tips that you may have to offer would be appreciated. I was diagnosed back in January and have it under control thanks to being on Prednisone but if you've ever been on this med you'd know that it is not beneficial to be on it for long term, 3 more weeks will make a full year with it in my system.





Any info would help. And I'd appreciate it if I didn't get any unneccesscary answers as this is a very serious issue for me and others. It is a skin disorder that (in my case) affects the mucous membranes with lesions. It's very painful.

Auto-immune Disease?
There are 3 types of Pemphigus: The 2 which may apply to you are PARANEOPLASTIC PEMPHIGUS (PNP) or PEMPHIGUS VULGARIS (PV). Which do you have?





I assume you have the latter as it is the most common, and thankfully least serious.





There is no specific cure available, but the condition is controllable with heavy immunosuppressive treatment.





The standard treatment is with corticosteroids, which are often started at high doses (eg. 60-100mg per day), together with immunosuppressive drugs (Azathioprine, Cyclophosphamide, Mycophenolate mofetil, Cyclosporin, Methotrexate). Other treatments sometimes used are: Dapsone; Gold injections; Tetracycline, minocycline or doxycycline combined with niacinamide; plasmapheresis (plasma exchange); intravenous immunoglobulin (IVIg). Both plasmapheresis and IVIg treatment are only used in rare instances.





A new group of medicines called biologics are being developed by a number of pharmaceutical companies (for example Rituximab is a biologic that is used to treat non-Hodgkin’s lymphoma). It is possible that some of these in time may prove themselves to be useful in the treatment of PV, although a lot of studies and tests have yet to be done to find out if this is the case.





Drug doses are reduced slowly to the minimum required to keep the condition under control (which varies from individual to individual).





Topical therapies are sometimes given together with systemic drugs to help heal difficult erosions.





I know its medical jargon, but perhaps you can discuss this with your doctor. I hope you are seeing a specialist such as a haemotoligist or immunologist as well as a dermatologist for the most up to date treatment available.





Chris- Registered Nurse.
Reply:I have Pemphigus Foliceous as well! I can understand your pain! Most doctors dont even know of this disease. I only get lesions a few times a year and use cortisone creams to control it. Hope you are doing better now. It's a tough disease to battle. Report It

Reply:I know some about Auto-immune Diseases, however this condition I don't have much knowledge.





I found this link that might help to make clear your doubts, but also check with you doctor.





http://en.wikipedia.org/wiki/Pemphigus





Good Luck





Hope this helps!!!

creeping