Reply To: Droopy Face!

March 30, 2012 at 9:33 pm

hi there- I am so glad you got in to see a Rheumatologist- I have been on plaquenil for about 6-7 years- I was taking it for possible bechets ( an autoimmune vasculitis) and inflammatory issues which were not fully characterized – then cidp started almost 4 years ago ( as with you considered atypical) saw neuro and rheum at Mayo clinic at this point only on ivig – this past year at my follow up at mayo I was found to have high ANA and RNP antibodies- along with joint pains and new raynauds- so now rheum has dx with mixed conn tissue disorder which is an overlap syndrome with features of many autoimmune diseases such as lupus, Rheum arthritis, sjogrens and scleroderma. I don’t know how this ties in to my cidp except that they are all autoimmune and that my cidp responds to IVIG- so I am currently on IVIG 20 grams every 10 days, Imuran 50 mg per day, plaquenil 200 mg per day and fish oil and a few vitamins. It seems my immune system is just looking for trouble- the plaquenil is very safe and side effects not bad and does not make you more susceptible to infection- helps the joint pain and fatigue a lot! I feel for you as you are going through so many of the things I did- I am still here and living a decent quality of life – pay special attention to getting rest ( not easy with kids I know I have 2) sleep deprivation is the worst and a natural food diet helps too- try gluten free sometimes that helps people feel better as well- I will go back to mayo for follow up this fall for both neuro and rheumatology- let me know if I can answer any more questions!