Totally lost with it all

Hello All. I’m updating on my post where I saw a new rheumy and was told I probably have fibromyalgia and Psa has burn out.
Saw another chap yesterday. Registrar I think. Checked me over and offered me ultrasound guided steroid shots in hip, shoulder and Achilles. But no other treatment. Said the disease isn’t active? Said I have golfers elbow and enthesitis. But I’m in pain as usual, have nail pitting etc. He seemed scared to over ride the other guy I saw’s opinion. So I asked why he is sending me for injections if the disease isn’t active? He wouldn’t look at me. Said I have to see a consultant to discuss and gave me an appointment in October. I have responded really well to consentyx but not anti tnf’s and he said I’ve had too many side effects.
I’m at my wits end. Feel as though I’m starting all over again.
Would appreciate any advice

First thing under no circumstances let them put a steroid joint in to your Achilles tendon. The steroid can cause the tendon to literally fray. The hip and shoulder ones should help but steroids is not the way to treat PsA without PsA meds.

I’m sad to say Flin you saw another dud idiot who hasn’t a clue that all your issues like tennis/golfers elbow, achilles tendon issues, hip and shoulder issues, nail pitting etc are all indicative of active PsA disease. Did he examine you from head to foot under the PsARC exam protocol? Did he assess you under the Leeds Index for enthesitis? It doesn’t sound like it.

Go back to that list I sent you and try and see one of them. Privately if necessary. The appt shouldn’t cost more than £250 max on a private basis.

If you have active pain like tennis elbow then it hasn’t burnt itself out. And what does that even mean? Remission is possible for some in the early days, but I feel like most of us get diagnosed after that point has passed.

My daughter is technically in remission. She was diagnosed with juvenile arthritis when she was 15 or 16 years old. She has occasional mild “overuse” injuries which we all know are PsA related. That’s pretty much how I started off in my late teens and I wasn’t diagnosed until mid thirties

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Juvenile arthritis they say can ‘burn out’ but usually when diagnosed as a pre-teen child. Sadly I’ve heard of too many people who had JIA as a child who then develop something like PsA as an adult. RA can sometimes ‘burn out’. Sadly although PsA can wax and wane it never carries the label of being ‘burnt out’ as any stage.

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