I am struggling with what may be my first attack of Sjogren’s. It began with severe dry eyes then progressed to swollen salivary glands, joint pain in fingers and toes, back pain, abdominal pain, leg weakness, and extreme fatigue. My eyes tested for the dryness of Sjogren’s but my Neurologist, Rheumatologist, Primary and ER doctors have no clue. Recently, I was given a steroid injection followed by a Prednisone taper. I’ve had 2 doses so far and both times my legs got extremely weak and I had terrible several hours after. However, then my symptoms have been lessened. I have been to 2 ERs, had 2 CTs, and had 2 MRIs in the last week. I am so exhausted and beyond scared. My sister was diagnosed at age 20 with Sjogren’s but only had the dry eyes and dry mouth. Cauterization of her tear ducts fixed her problem. I have so many questions as my medical care is lacking. Can the progression of my symptoms be stopped with only Prednisone? Has anyone else suffered from harsh systemic symptoms and why don’t doctors understand what this is and how to help? Any feedback would be greatly appreciated as I have been struggling to find the best direction to seek treatment. Thanks for being here!
There are systemic treatments other than prednisone available. It’s common to use prednisone early on to knock back symptoms but long term it’s less than ideal. If you’re not getting the proper care please seek a second opinion.
I’m sorry that you are suffering so much and hope you get some relief soon. Have you considered going to a Functional Medicine Doctor?