What should a 'good' Rheum be like?

General
1

I'm fairly sure I have PSA, but after over a year of seeing a Rheum doc, she won't give me a diagnosis. Each time I see her, she looks at my hands and presses on each knuckle, then asks if I have any pain. Same thing with my knees. I continue to have pain in all the same places: fingers of both hands, but worse on the right; left ankle (though both swell); and two places on my back. The Rheum doc only seems concerned with how long my hands are stiff in the morning, and keeps pointing out that I don't have the telltale 'sausage' fingers. She doesn't acknowledge the other pain (ankle, back) at all as having any possible relation to anything... Over time I became so depressed and tired of trying med after med with nothing helping that I just stopped going to the appointments completely. Can anyone tell me what to look for in a Rheum doc and how to find a good one? I realize you all can't recommend anyone specifically, but I would appreciate any advice you can offer. Many thanks in advance.

Renee

2

I've been to many rheumatologists over the years (30+) , and have some ideas about what I personally like in a dr. These might not be what other people like! (my disclaimer :)

My doc looks at my labs, examines me physically (a quick exam through my clothes of spine, large joints, then hands and feet) AND listens to how I'm feeling. What I say is taken as fact. I do not get skeptical comments or dismissed.

My doc gives me medication choices, understands that I've done research and understand my condition, and discusses my options with me. Then he allows me to make the choice.

My doc is neither conservative in treatment, nor jumping on the newest bandwagon. Together we follow a balanced approach.

I like a dr. that doesn't rush me. Sometimes this means that I have to wait in the waiting room for quite awhile, as he is "not rushing" another patient who needs more time. The front office staff are polite. The office takes my calls and deals with faxing things to the insurance when needed.

I understand that my rheumy can't fix me. I don't spend time asking for the impossible, or for treatment for issues outside his purview. On the other hand, my doc doesn't refer every little problem to another specialist, he understands that PsA affects me in multiple ways. I'm lucky that he will prescribe narcotic pain medication when I need it. That's not available in many states now.

I guess it all comes down to mutual respect.

One last thing.... until my current rheumy, all my rheumatologists were women (a statistical anomaly, I know). I generally prefer women dr's, but after moving to the Seattle area and encountering the worst rheumy ever, who was a woman, I decided I better get comfortable with my male rheumatologist, as he's great!

3

Wow. I cannot understand why she won't give you a dx. I'd most def seek a second opinion. Fact is, not everyone has the 'sausage fingers' she speaks of. I certainly didn't at first. And yes, your ankle and back pain can be completely related. She is not looking at the whole picture!

Here's a directory of rheumatologists to help you find one: http://www.rheumatology.org/Directory/Geographic_Membership_Directory/

Help yourself out and do some research so you know what to politely insist upon. Here's some links: http://www.medicinenet.com/psoriatic_arthritis/article.htm

http://www.aad.org/dermatology-a-to-z/diseases-and-treatments/m---p/psoriatic-arthritis

4

We obviously don't have all of your records but from what you have said, I can understand WHY you haven't been Diagnosed with PsA. There are VERY specific criteria as listed here:

http://www.rheumatologynetwork.com/sites/default/files/rm/2083310.png

Keep in mind before the CASPAR criteria are applied there must be very clear evidence of inflammatory articular disease (joint, spine, or entheseal)

Here is a pretty good article explaining the whole process including the documenting of inflammatory articular disease.

http://emedicine.medscape.com/article/331037-overview

"Pain" isn't enough. Your doc has tried a progression of meds. Thats usually a really good way to figure out "inflammation" If none of them have worked then its probably not inflammatory. if they have worked, congratulations you are getting the meds you would get with an official diagnoses. He isn't obesessed with your knuckles, that just happens to be the easiet point to check for a number of things. Rheumys are taught their first day of residency how track a number of things just by examining the hands. Your whole story is in your hands (or feet) A skillful Rheumy will get a better picture of you disease from these two areas than anywhere. Morning stiffness is also proof of inflammation.

Even with an official diagnoses, pretty much all a rheumy can do is try different meds and combos and track the signs you are speaking of. Its not like "oh you definitley have PsA, all you need do is take this magic gookumpucky and all will be well. Sounds to me (from what you have said) your doc is trying which frankly puts her ahead of most. WAY to many of our members get sent out with bottle of advil and are told to come back in 6 mos.

5

Thank you for this information! It has educated me and now I understand much of what I did not before.

tntlamb said:

We obviously don't have all of your records but from what you have said, I can understand WHY you haven't been Diagnosed with PsA. There are VERY specific criteria as listed here:

http://www.rheumatologynetwork.com/sites/default/files/rm/2083310.png

Keep in mind before the CASPAR criteria are applied there must be very clear evidence of inflammatory articular disease (joint, spine, or entheseal)

Here is a pretty good article explaining the whole process including the documenting of inflammatory articular disease.

http://emedicine.medscape.com/article/331037-overview

"Pain" isn't enough. Your doc has tried a progression of meds. Thats usually a really good way to figure out "inflammation" If none of them have worked then its probably not inflammatory. if they have worked, congratulations you are getting the meds you would get with an official diagnoses. He isn't obesessed with your knuckles, that just happens to be the easiet point to check for a number of things. Rheumys are taught their first day of residency how track a number of things just by examining the hands. Your whole story is in your hands (or feet) A skillful Rheumy will get a better picture of you disease from these two areas than anywhere. Morning stiffness is also proof of inflammation.

Even with an official diagnoses, pretty much all a rheumy can do is try different meds and combos and track the signs you are speaking of. Its not like "oh you definitley have PsA, all you need do is take this magic gookumpucky and all will be well. Sounds to me (from what you have said) your doc is trying which frankly puts her ahead of most. WAY to many of our members get sent out with bottle of advil and are told to come back in 6 mos.