What to ask rheumatologist about Sjögren's?
September 13, 2017 8:24 AM   Subscribe

Based on some recent labwork, it looks like I have Sjögren's. I'll be seeing a rheumatologist in a couple of weeks and I'm trying to brainstorm some questions to ask at that appointment. (TBH, I'm not really distressed about having Sjögren's - I just don't want to pay my $35 copay for a 5-minute chat that covers things I've already read online.)

This all came about after I had two bouts of parotitis this summer (first on the right side in late July, and then on the left side in early August). Antibiotics did not work, so my PCP referred me to an ENT. The ENT prescribed prednisone to get the swelling down, and suspected an autoimmune disorder. He ordered some labs, and suggested I see a rheumatologist after getting these results:

Sjögren's Antibodies SSA: 8.0 (normal range: 0.0-0.9) - elevated
Sjögren's Antibodies SSB: 0.2 (normal range: 0.0-0.9) - normal
Rheumatoid Arthritis Factor: 64.6 (normal range: 0.0-13.9) - elevated

I'm 27yo, cis female, generally in good health. My mouth and eyes have been a little dry recently, but Biotene mouthwash and gel eye drops have helped a lot. Otherwise no real autoimmune symptoms... I guess my cheeks and nose do tend to be a little pink, which is either just dryness or the world's most mild malar rash. I take three anticholingerics: Zoloft (for anxiety), Xanax (prn for anxiety), and Elavil (for migraines).

Some questions I already plan to ask:
* Are any of my prescriptions likely to worsen Sjögren's symptoms?
* What routine care/labs would you recommend?
* I know I need to tell my dentist about this, since dry mouth can lead to cavities. Are there other professionals I might not think to mention this to?
* Is prednisone the best treatment for parotitis, assuming it happens again?
posted by schroedingersgirl to Health & Fitness (4 answers total) 3 users marked this as a favorite
Best answer: Question I wish I had asked when I was first diagnosed with autoimmune arthritis - what are the signs that this isn't under good control? When should I come back in to change my meds/try something new? Asking "what's the prognosis" was useless, because the answer was invariably "it depends", so asking for specific guidance on how to tell what normal-under-the-current-regimen should be is the thing I try to do now. Maintenance meds for autoimmune conditions can work for a while and then stop working so well (ask me how I know!) plus autoimmune conditions tend to worsen over time, and figuring out when it's door #1 and when it's door #2 (insofar as they can even be distinguished) is tricky.

This might be especially useful if your current symptoms are fairly mild - I spent a couple of years not treating/ineffectively treating my arthritis because it didn't interfere with my daily function, and then another year pretending this was just a flare and would go back to normal, and I would have been better off treating it sooner.
posted by restless_nomad at 8:39 AM on September 13, 2017 [5 favorites]

Best answer: Ask about long-term prognosis and treatment, both what's available and what you should know about it.

Do you have chronic pain? If so, talk to them about this. If they cannot prescribe pain medication for you, ask for a referral to a pain management clinic.

In addition to asking about medication interactions and whether your meds are going to cause trouble, talk to your rheumatologist about the underlying conditions and how they may relate to Sjögren's, and how any medication prescribed for Sjögren's may impact your other conditions.
posted by bile and syntax at 9:00 AM on September 13, 2017 [1 favorite]

Best answer: Because of your age/sex, ask about how this will affect your fertility in the future and/or drug interactions with birth control and/or if any recommended drugs are safe should you decide to get pregnant. Way way better to know all this stuff as soon as possible for life planning !
posted by genmonster at 12:21 PM on September 13, 2017 [1 favorite]

Response by poster: Thanks, all!

genmonster, I won't be having any biological children for Reasons, but that's a great thing for other women in my shoes to think about. I bet someone else will stumble upon this down the road and be glad you mentioned that. :)
posted by schroedingersgirl at 4:06 PM on September 13, 2017

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