So.....here I am after a another appt. with my PCP(who put me on a short course of prednisone-12 day...it helped get me through the holidays!) and an appt with a new rheumatologist, who did an exam and ordered tests and x-rays then promptly told me that in his 30 years as a rheumatologist he had never seen a "true" case of psoriatic arthritis. In his opinion, it is just people with simple osteo-arthritis that is being "catered to". Needless to say, I'm not going back. What has me concerned is that this guy is SUPPOSED to be the premier, best-of-the-best, GOD of rheumatology in this area. Now I'm on a search for someone else. I am soooo tired of this. This is not some exotic, impossible to diagnose and treat, oddball, 1 in 10million malady. Why is it so hard to find someone who will LISTEN and treat appropriately? Has anyone else ever had these issues? My PCP seems to be more in tune with what I need than the specialists that I've been to see AND listens to my concerns. The main reason that I was referred to a rheumatologist was for more appropriate treatment. My PCP believes that I need to explore other options under the care of someone who knows more about my issues in order to prevent the progression of this disease. I can continue the prednisone if I want but it is not addressing the underlying issue. This is why I love my PCP. Now I just have to find a rheumatologist that is willing to explore with me. So.....Happy New Year and here's a toast to successful exploration!
In the meantime, you may need to go in the backdoor. Do you have a good dermotologist? He can get you started on the appropriate meds.
How absolutely and totally frustrating and infuriating. You should be very glad that you have such a wonderful PCP, and I’m sure you are.
If Dr. Rheumy wants to meet someone with a “true” case of PsA for the first time in his long career, I’m sure I’m not the only one here who would volunteer to visit him with x-rays in hand.
No sense in beating yourself up over it, Sybil. You’re getting there … slow and steady and all of that!
7 years ago I was in really bad shape, and went to the Mayo Clinic in AZ (where I was living at the time) to get a full workup to see if they could find anything else they could treat, in case I had some hidden co-morbid condition.
After 2 weeks of lots of dr's and many tests and procedures, the dr. in charge of my case pronounced me "fine" with "no disease except mild psoriasis". I was INFURIATED. I said if that was the case, why had I been in the care of a derm. for severe P starting at age 8 (with inpatient at Mayo in MN), and PsA developed 2 yrs later, and see rheumatologists ever since for very active PsA (minus a few short remissions)? He shook his head and said he couldn't imagine what the other dr's could have seen. "I wasn't there" he said.
At the time I was using 2 canes, 2 wrist braces, compression gloves, and a heavy duty knee brace to walk 100 feet.
Obviously, even at "THE BEST" places there are some super-duper jerks. So no, it's not just you. Hang in there. I've got a great doc now in the Seattle area (my old one from before I briefly lived in AZ). Good docs are out there!
ps: at my autoimmune disease Meetup group last week, another new person came, who had ANOTHER horror story of the other rheumy in the area. If you get to talk to local people who need to see a rheumy, you may find out who to avoid.
As frustrating, expensive, and time-consuming as it is, keep trying. I got a similar blow-off from the head of the rheumatology department at the closest teaching hospital. Seems like anyone who has dealt with this for any time has a war story or two. With this guy, who gave him"god" status, his patients or himself?
Ask your PCP, your dermatologist if you have one, your pharmacist, etc., for recommendations. You might also check the online doctor rating sites. They are a long ways from perfect, but if someone has a lot of favorable comments they might be worth checking out.