Way back in January, my primary-care doctor said he thinks I may have psoriatic arthritis, so I requested a referral to a specialist. I was shocked to learn there was a six-month wait to see a rheumatologist! But my appointment is finally set for Friday, July 27.
What should I expect on my first visit? What sort of evaluation does a rheumatologist do for PsA? (I've already had the arthritis blood panel, which was normal.) What questions is she likely to ask me, and what should I ask her?
I just want to make the most of this visit, because I've been waiting so long, and who knows when I might get another opportunity to see the doctor.
I had a long wait to see a rheumatologist as well.
My most pressing complaint that led me to the rheumatologist were my ankles - I'd lost most of my range of motion. He looked at my ankles and other joints I was complaining about, checked my nails (pitted nails are often a sign of psoriasis / PsA), and asked me a LOT of questions. The appointment took 45 minutes to an hour, iirc.
It may help to have a list of symptoms, history of psoriasis and arthritis in your family, and what you've done so far to try to treat your issues (medications, vitamins, supplements, dietary changes, what helps, what doesn't). It couldn't hurt to familiarize yourself with PsA treatments as well - methotrexate, Enbrel, Humira, Remicade, etc.
Your first visit will consist of much Q&A including family history, medications you're taking, joints affected, lifestyle changes brought about due to pain or loss of range-of-motion etc. The Rhuemy will look at your nails and examine your skin for lesions as well as feeling your joints for inflamation and checking them for range of motion either by manipulating or having you do certain things. A rhuemy often orders their own blood work as it includes more detailed labs than a general practicioner would run. Depending on severity and how many joints are affected, the rheumy may talk to you about medications and will give you information on these medications either verbally, or with written documentation about medications and their side effects. The rhuemy might not prescribe anything until your follow up appointment after the bloodwork is complete. X-Rays will be ordered on the most problematic joints more than likely. Be prepared as Nym said with family history, including that of any systemic auto-immune diseases such as RA, Lupus, MS, Asthma, Psoriasis, and the like. After visiting http://www.mayoclinic.com/health/psoriatic-arthritis/DS00476/ you may have a better feel for which questions you might want to ask. Write your questions down since brain fog, and the length of the appointment may have you slapping your forehead later while you wish you remembered to ask something. May you have a compassionate and helpful physician and a good experience at your first appointment.
If at all possible, i suggest you take a support person. My Rhuemy is actually supposedly one of the most compassionate in my area, but can still be quite scathing (eg if you do any online research) insensitive (because he can’t see visible swelling my arthritis is very mild) and occasionally misguided (MTX is safer than biologics and just as effective for PsA - which is not true according to his own rhuematology association).
The support person, as well as helping you to feel empowered, should also be someone who can “vouch” if you like, for the impact on your life the disease has. In my case, the Rhuemy was very keen to dismiss my arthritis as not requiring any treatment at all, until my husband explained how much it had limited my activities.
My husband and I actually had a list of outcomes we wanted from the appointment. Without him present, and staying focused on what we needed, I think there’s a very good chance I could have walked out of there completely demoralized with no treatment.
I know when you wait for so long it’s exciting (my wait was only 3 months), but try to stay focused on what you need, and remember you are in it for the long haul. Good luck,
I second the bring someone with you idea - for the reasons stated, and also in case you 1. forget anything or 2. try to downplay things - having someone who knows what you want to discuss, who feels comfortable asking questions on your behalf, and who can give you the evil eye if you try to downplay your symptoms can be invaluable. Also - they will perhaps remember more of the info given by the doctor than you, which can be incredibly helpful!