I agree, there is so much help from well educated and experienced people here…and YOUR story is a part of it! Thanks for encouraging all of us.
A month ago when I was in terrible pain all over I had to see my PCP for something else. I asked her to run all the inflammation markers just for kicks. They came back zip!
I find it hard to believe these markets show nothing when I am in terrible body pain and running an 100.5 fever, but they don’t show up. She said probably the Tremfya keeping them down. Down from what? How can I be n that much pain from inflammation nd running a fever and nothing. I don’t put much stock inteh blood test for inflammation any more.
But PsA is seronegative. It’s classed as seronegative. That means it doesn’t show up in blood tests for inflammation for at least 60% of PsA patients. It’s an anomally of the disease. But a properly worldwide medically recognised anomally.
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After 19 months I finally saw my rheumy in person. Certainly not a great visit and confirmed my need to seek another rheumatologist. He is 70+, likely not going to continue his practice anyway so I might as well start the search. I appreciated his wealth of experience and knowledge but oh man, his approach is getting more bonkers all the time. Here is the summary
- I told him I use Celebrex a few times a week and that it helps with inflammation pain. His response was, “Celebrex is not an anti-inflammatory, only an analgesic.”
- He is mad that I don’t have his brand of orthotics and I told him my feet are doing better as I go barefoot most of the time in summer (or crocks/sandals) He couldn’t hear me saying, “My feet are moving towards better”.
- He looked at my hands, poked around and asked if my hands fall asleep and go numb at night. I said that they don’t. He then wrote a prescription for my new diagnosis of carpal tunnel. I have no signs of carpal tunnel. My dexterity is very good and I can still use tools with strength and accuracy. My distal joints are painful at the end of the day as are other joints that I tend to overuse. He didn’t address anything PsA related.
- The appointment started with him telling me that my blood work is very good, inflammation markers are all low so the Rinvoq must be working.
- I told him how terrible I was in April and went on 4 days of prednisone starting May 6 and that I was still benefitting from that burst. He was very agitated that my GP gave me prednisone.
I could go on but what’s the point? He called other doctors amateurs, was ticked off that I didn’t have my knees scoped upon his recommendation. (My GP told me not to unless obviously needed. She feels that knee scopes for “checking around” are over done and lead to knee replacement later.) And now I’m supposed to wear hand splints for my carpal tunnel that I have no signs of.
At the end, he suggested that I might change meds and suggested Simponi but left it up to me. He was overall dismissive, didn’t listen, insulted me and other doctors calling them a bunch of amateurs. There is my latest update.
Get on with that search for a new rheumy @Amos asap! So he didn’t examine the 68 joints via a PsARC exam, which his felllow Canadian PsA specialists advocate? He also seems to have forgotten PsA is seronegative too, a view also so much endorsed by his fellow Canadian PsA specialists. And weirdly diagnosed you with carpal tunnel when you not suffering any symptoms of that. That’s bonkers frankly.
@Amos and @Poo_therapy my husband had that happen, the carpal tunnel diagnosis. It was his first visit to a rheumatologist, and even though he complained of no symptoms of carpal tunnel, he tested him in office and claimed he had it. I just watched all of this and flat out told my husband that he wouldn’t be going back to see him and that he would see mine if need be.
On the flip side, when I just saw the hand surgeon re trigger finger and mentioned numbness, he simply asked me if I wake up with pins and needles. Nope, just on compression in my palm. No carpal tunnel diagnosis lol
Do they get a bonus for diagnosing carpal tunnel syndrome or something??? 
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Only if it involves both hands and feet!
I have never had a PsARC exam in my history of 2 rheumy’s. If it involves paper work and can’t be done in 10 minutes, it’s not likely used here.
My understanding though is that the PsARC exam was developed in Canada though??? Hands and feet is just what general rheumys examine who see RA patients only. You need to see a PsA specialist rheumy.
Also in Canada - I’ve had 5 rheumies and only 2 have ever done the PsARC. FWIW, it’s on the computer now.
I got a good laugh from my GP when I told her about my visit with the GP. She looked at my hands and saw no sign of carpal tunnel and just sighed at the fact that whatever the rheumy has wrong with him, he assumes to be wrong with the patient. She also is sending request to two different rheumatologists to take me on as a new patient. She also suggested that I stay on Rinvoq rather than changing to Simponi as it would be better to let the next rheumy have input on that decision. It’s been a month since my prednisone burst and I am officially aware that all lingering benefits are gone. I’ve been off Rinvoq for 15 days as I have had a persistent sinus/upper respiratory infection and thought I might fight it off better without the biologic. It is finally in its last days but wow, that was a persistent, long period of coughing!
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I agree and have requested a referral to one that I saw when all this began but only once. She was certified to do some kind of high end ultrasound on my hands and feet and just passed the results on to my rheumy at that time. It was her conclusion after the ultrasound findings that I do indeed have PsA as something was visible in my hands. (not carpal tunnel!!!)
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