I always find it rather interesting to read what doctors write about my condition(s).
I finally got the package in the mail from Rheumy’s office that needs to be sent off to see if we can get the new meds covered by insurance. Reading the appeal letter is rather interesting because it tells you exactly what’s wrong with me and what we need to do in order for… well, something to happen. I don’t even really know what that something is, anymore.
But just for my own records, here it is, plain as day, the details of SALLY & Co.:
This patient suffers from scleroderma and systemic lupus erythmatosus, otherwise known as an overlap syndrome. This was diagnosed approximately 5 years ago. She has developed CTD-ILD (Connective Tissue Disease Related- Interstitial Lung Disease) that has resulted in pulmonary hypertension. Her other symptoms include renal dysfunction secondary to lupus nephritis, GI dysfunction (dysphagia, gastroparesis, GERD) secondary to the sclerosis of her GI tract, skin rashes, joint pain and swelling, telangiectasia of hands and face, sclerodactyly changes and Raynaud’s phenomenon. In the past she has been treated with sildenafil, antihypertensives, inhaled steroids and beta-agonists for her pulmonary hypertension, and high dose corticosteroids, azathioprine and cyclophosphamide for the underlying disease. She also has significant chronic pain and has developed non-alcoholic fatty liver over the course of her disease.
Recently, her pulmonologist expressed concern that her lung and cardiac status is worsening, and patient has also had increased GI symptoms. As she has already tried all of the standard therapies, we wish to try Cellcept (mycophenolate mofetil) in a dose of 1.5-2g bid.
Because this medication has no official indication for lupus or scleroderma. Due to the seriousness of the illness and the lack of efficacy and side effects of the previous medications, we would request that you would cover the medication under her plan. She would only be receiving it for a period of 1 year.