Excellent info once again @Poo_therapy! I think you could write a book called, “PsA for Dummies” or “An Inflammatory Look at Ineffective Rheumatology”…or both! There, you have your calling before you. A book AND a sequel already in the making. (We’ll talk royalties off site.)
Seriously, people like you are an asset to this forum, thanks from all of us who benefit.
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Thank you. I’m passionate about empowering people to get the best treatment they can for this incredibly lousy disease. It is a rare disease and so rightly on this platform as such too. So demanding your rheumy adheres to best practice for PsA is surely only sensible? And that best practice is constantly being improved too by the PsA specialists who have the same passion to provide best treatment. Through further research and trials and whatever else. It’s a constantly improving scenario.
I’m incredibly fortunate to be seen at a centre of excellence for PsA in the UK, hence I’m doing relatively well consequently although it took the 5th med tried to actually work for me. So I’m not a ‘standard patient’ either. I’m luckier still that we have the NHS in the UK and it costs me nothing and I’ve no silly insurer telling me what med I can have or not have or for how long either.
So I simply try to pass on best practice as I discover it. However I have learned if you haven’t researched your disease and you’re not properly assertive and politely resolute on only receiving best practice you can fall through the cracks badly. And the only person who suffers is you as the rheumy still gets paid anyway sadly.
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I was ever to write such a book it would be called ‘Essential Reading for Rheumatolgists when faced with a patient with possible PsA.’
I especially like this title “An Inflammatory Look at Ineffective Rheumatology” 
Because the nonsense some rheumys come out with about PsA is simply shockingly awful frankly and they ought to be ashamed of themselves.
In all seriousness I do think about starting a charity here in the UK which ensures it meets with every single rheumatologist department in every hospital in the UK to explain to them how to both diagnose and treat PsA and more importantly how to treat patients like the very ill human beings many of them so are. It’s outrageous that some patients wait years and years for a coherent diagnosis too. It’s rare but it’s not rocket science either. Rant over for now.
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Perhaps things will only change when someone that is a rheumatologist and carries a good peer report gets involved in raising the standards for PsA diagnostic expectations that change will come. In Canada, specialist get paid by appointment and patient load. It makes sense financially to have as many patients as possible. With the shortage of doctors and especially specialists, many fall through the cracks. I have to wait over 18 months for an in person visit with my rheumy who took all the time telling me I should see his friend and get custom orthotics. After 18 months, not one mention from him about how my PsA is. He only looks at blood work and mine has always been normal from day one.
My 84 year old mother in law is still very bright, loves to make puzzles and was an avid reader. But she will be hitting 2 years with growing cataracts so she can’t do the things she loves. We have many waiting 18-24+ months for hip and knee replacement. In that time they lose all muscle tone, put stress on other joints and live on pain meds while waiting. Sigh. Our government has dropped the ball so badly regarding all things health care while climate change receives the bulk of the funding…but that is another topic I don’t want to ignite here. I’m also in between rheumy’s as mine is soon retiring (it’s about time) and there is a waiting list for a new one. So I either keep taking Rinvoq though it is failing or quit the Rinvoq and manage with meds that my GP can prescribe like Celebrex or prednisone…and I do not want the steroid misery again. I might have out-ranted you…@stoney’s turn.
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Great!! I had shingles about 4 years ago from the Biologics. Second time in my life! No fun and hope never again.
Sounds interesting that docs thinks it was the shock. let us know!!