Tuesday, January 4, 2011

Maintenance Labwork for Sjogren's Syndrome

I enjoy reading emails from Reasonably Well's readers. Last week, S. asked this very good question:

How often should I be having lab work done with Sjogren's syndrome? What lab tests should my doctor be ordering?

As luck would have it, the December issue of The Moisture Seekers Newsletter addresses this exact question. Here's the answer:

For the majority of patients with established Sjögren’s syndrome, routine blood tests are not necessary. Laboratory testing is important to monitor those Sjögren’s patients who are taking certain medications, who have extra-glandular involvement (such as associated diseases of the liver, kidney, or blood), or who are at higher risk of lymphoma.
The medications for Sjögren’s patients that require routine blood monitoring include NSAIDs (CBC, electrolytes, and creatinine, every 6-12 months during chronic NSAID ther- apy), prednisone and other corticosteroids (blood glucose, when first initiated), and immunosuppressive agents such as methotrexate, azathioprine, mycophenolate mofetil (CBC and liver function tests every 8-12 weeks and more frequently when the treatment is initiated). Patients on cyclophosphamide may need more frequent monitoring of their CBC and periodic urinalyses. In general, routine blood tests are not necessary for Sjögren’s patients taking hydroxychloroquine (Plaquenil®), pilocarpine (Salagen®), cevimeline (Evoxac®), or topical cyclosporine (Restasis®).
Certain forms of extra-glandular disease in Sjögren’s syndrome require routine blood testing to monitor the activity of the organ involvement and/or the benefits of treatment and the potential side effects of medications. Prominent examples would include interstitial nephritis with renal tubular acidosis (which can be associated with electrolyte abnormalities), biliary cirrhosis, autoimmune hepatitis, anemia, and leucopenia. Some forms of extra-glandular disease are treated with immunosuppressive agents and routine blood tests are required to monitor the therapy.
A minority of Sjögren’s patients have a type of disease which is inherently associated with a higher risk of lymphoma development. These patients are almost always identified at the time of their initial evaluation for Sjögren’s syndrome and have key clinical and laboratory features, including palpable purpura (a vasculitic rash of the lower extremities), low levels of serum complement, monoclonal proteins, or cryoglobulins. In such patients, routine blood tests are warranted every 12 months or less to look for changes that might indicate the interval development of lymphoma, including blood counts, protein electrophoreses, immunoglobulin quantitation, free light chain ratio, and complement levels. 
Alan Baer, MD
Your membership in the Sjogren's Syndrome Foundation includes The Moisture Seekers Newsletter, as well as access to an enormous amount of information and resources on their website.


Jenny P said...

Interesting information...except that I've been getting blood labs done for being on Plaquenil for years. Interestingly, it's been both doctors who put me on the medicine, so I doubt it's just my one doctor's personal preference. (That is, of course, in addition to the related eye exams, etc.) And now she added other tests to the list because of the Prednisone. Actually, she also ordered a dexa scan because of the steroids, which I hadn't expected.

I finally signed up for my membership to the SSF...but haven't received my log-in info even after emailing the foundation about it! I'm so eager to have access to the newsletters!!

annie said...

My rheumatologist sends me for blood work once a year, but my nephrologist has been asking for blood work every 3-6 months. There is something iffy going on with the kidneys, and I think he's also done some of the antibody testing that is done in rheumatology (I think he's checking to see if I have lupus). I should get results next week, at my next appointment.

Blogger Mama said...

My Rheumy also sends me for lab work every year due to my being on Plaquenil. If I recall it has something to do with it effecting my liver or kidneys if I am on it too long. She most specifically runs an ANA count every year to see if the levels correlate with my pain/symptom levels at all.

Anonymous said...

Doctors often order tests even if they are not needed so they don't get accused down the line of missing something that would have been caught if they had ordered the test. Basically, your health care is up to you. You don't have to do anything your doctors say if you don't want to.

Anonymous said...

You are so right in that last statement in your comment: "You don't have to do anything your doctors say if you don't want to". It's been 15 years ago, but I talked with the Manager of the Medical Disciplinary Board in my state, because I was getting complaints from clients about doctors' aggressiveness with their patients, i.e. 'you will.........."; she was livid when she heard this. She said that the patient always has the right to say 'No' to a doctor's request, always. You are going to a doctor for their ADVICE, and you can take it or leave it.