Multiple Immunological Diagnoses - Non-responsive to medications
Hello, Thank you again to the kind folks that commented on my last posts re: Sudden Rise in ESR. Here is the post-appointment with the rheumatologist update.
The rise of the ESR from 0 to 93 in 2 months time is a complete surprise to the treatment team and is NOT chronic. In addition to the ESR of 93, all other inflammatory markers have risen to their highest point since diagnosis.
These treatments and their magnificent side effects have been endured: High dose steroids; high dose methotrexate; plaquenil; and Rituxan. The rheumatologist reports there has been "zero response to treatments". As methotrexate, now discontinued, caused frequent vomiting and diarrhea, extreme fatigue, and almost total hair loss, cyclophosphamide is not being considered due its higher occurrence of side effects. Long term high dose steroids have produced Cushing's Syndrome but is being continued. Plaquenil is being discontinued due to retina issues and unbearable tinnitus. Rituxan is being continued.
Neurological evaluations including MRIs, extensive blood work, nerve conduction and other horrendously painful testing have been conducted at 2 separate facilities. Both exams have ruled out neurological disease, including demyelinating diseases.
Further testing is scheduled in the hopes that there was simply a long delay (22 months) in response to medications. Not responding at all is beyond frustrating; it is terrifying to "be the first patient in over 10 years to have no response to treatment". I feel like I am a ticking clock with the alarm going off at whatever time the clock choses. My greatest fear is to be diagnosed with refractory rheumatological inflammatory disease.
People with rheumatological and immunological issues understand how infuriating these diseases can be. My family and friends are dumbfounded and overwhelmed, as am I. Thank you for your support.