I am a 46 year old female and I recently saw a Rheumatologist and have a
possible diagnosis of Sjogren's. My lab work was negative, but my doctor wanted
to start me on plaquenil because he thought it would be a relatively safe
treatment considering my symptoms and he said 15% of people with Sjogren's have
negative labs. I had been ill for about 7 months with chronic sinusitis and
bronchitis. I had sinus surgery, although, I continues to get the infections.
When I ended up with parotitis my ENT said she thought I have Sjogren's and
referred me. I have also developed some migrating muscle and joint discomfort
during this time. I have a family history of RA, psoriasis and Hoshimoto's. I
also have Reynaud's, which has been an issue for years. My Rheumatologist does
not think the muscle and joint pain is related to Sjogren's and thinks I might
have seems to Fibromyalgia. I also have an odd symptoms that my doctors don't
seem to understand. I have facial tenderness. Sometimes my face aches so bad
that I can hardly wear my glasses. My muscle stiffness is worse in the morning
and after I am inactive for a period of time. Also, it also seems to flare up
when I do any type of physical activity. Some of my other symptoms include
gritty eyes, dry mouth, fatigue, insomnia, anxiety. I am trying to figure out
if these symptoms are all related to Sjogren's or if I have something else going
on. Please help.
DR. CARTERON'S ANSWER
Hopefully, you have reviewed all this with your primary care physician to make sure more common conditions are not present. In my experience muscle pain (myalgia), and joint pain (arthralgia) can be a part of the systemic symptoms of Sjs. The stiffness symptom does suggest inflammatory pain so I'm not sure Fibromyalgia should be added to your list. Plaquenil often can help these symptoms.
Explore with your physicians if the facial pain you describe could be a cranial neuropathy. These are seen in Sjs, especially trigeminal neuropathy, and can respond to Plaquenil. Also, medicines like gabapentin (Neurontin) can be used if the nerve pain is interfering with the quality of your life.
Probably more than 15% of Sjs patients have negative blood tests (SSA/SSB). I would consider doing a minor salivary gland biopsy (lip) to confirm that lymphocytes are present, and exclude sarcoid. This may best be done at one of the SICCA Registry Centers now in the US (NIH funded)-UCSF San Francisco, Johns Hopkins Baltimore MD, Philadelphia PA. Where the pathology is read is very important, even if your ENT is skilled at doing the biopsy. With the sinus infections you may want to discuss with your physician the value of excluding an underlying immunodeficiency. Usually start with IgA/M/G and IgG subclasses.
That was a good pick-up on your ENT's part to think of Sjs and refer you!