Hi there new and in need of help

Hi there everyone. I’m new to the board and was hoping we could share experience of possible misdiagnosis. I live in the UK and was diagnosed with PSA about 6 years ago.
The rheumatologist that diagnosed me is quite an expert in the disease (now retired) and I had all the classic symptoms - joint pain in many joints, very sore Achilles, nail pitting, sausage finger, stiffness after rest etc. I tried DMards and then Cosentyx which worked well for 2 years. I’ve also always responded really well to steroid butt injections and hip ones too. Recently Cimzia and remicade really haven’t agreed with me.
So here’s the deal. I got called to see a new rheumatologist and was hopeful he could find another good biologic for me. But he had other ideas. As I sat down he said ‘you suffer from depression’, he’d seen on my notes that I take a low dose of Prozac, and went on to try and tell me the symptoms I have. Many of which I don’t. He then examined me and said the PSA has burnt out and I have fibromyalgia. So I pointed out that I have all the same symptoms and have responded to treatment in the past. But he was adamant and would only offer anti-depressants. I googled fibromyalgia and don’t seem to fit the diagnosis but am pretty textbook PSA.
This is a condensed version of events and needless to say I’m quite shocked!! It felt as though he’d decided before I even sat down.
So here I am with all the usual symptoms, loads of nail pitting and joint pain and feeling rather desperate. Any comments would be welcomed.

Welcome here @Flin and thanks for sharing a bit of your journey. I’m only about 5 years into officially being diagnosed with PsA and have found the folks here to be very helpful. You will benefit from those who have long experience and a good handle on the “science” behind PsA. Also, if you just need a place to vent…this group understands. I’m on my third rheumatologist already.
I can only suggest that you doubt your rheumy more than your experience and “gut” feeling. PsA, as you know is diagnosed so much by symptoms, visual and touch. We can’t just spit in a flask and have a piece of paper turn colour to give a quick and simple diagnosis. That leaves us subject to those with training and experience. You sure seem classic PsA and have more symptoms than many. Perhaps you might check the certification of your new rheumy…is it really his name on the plaque on the wall? I’m sure you will hear from a few more and again, welcome!

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That makes me so mad! That is laziness on the part of the doctor. You’re not new and shiny and need a change of meds to manage your PsA. But instead of doing that he’s announced you have fibromyalgia.

Don’t get me wrong, fibromyalgia can and does occur in conjunction with chronic pain and inflammation, but the primary condition needs to be properly managed first. I had it added to my diagnosis and was annoyed. I had it removed after a discussion with my rheumatologist. The fact that you have a history of depression doesn’t equal a diagnosis of fibromyalgia.

Okay, I’m done, rant over

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Thanks guys. Great to be in the company of people who understand. I’m must say @Amos by the time I left the hospital I was wondering if they’d just pulled the guy in off the street. And @Stoney thank you for your words.
I have emailed the complaints department at the hospital and shall call the rheumatologist nurse line tomorrow. It’s really made me doubt everything.
Hope everyone having a good weekend

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Hi Flin,

I live in the UK too. Sadly you’ve just seen an ass of the rheumy who knows sweet nothing about PsA. Even the language he used - PsA can’t and doesn’t burn out. Any PsA specialist knows that. RA can burn out. JIA can burn out. The fact that you took Cosentyx (a PsA only med as in it doesn’t work for RA) and it helped a bit shows how inexperienced he was in all things PsA.

PsA specialists in the UK are few and far between but the NICE guidelines and protocols are there to help the less experienced in PsA rheumys too but they have to read them. Some it appears can’t be bothered to do that either.

So where are you based in the UK? County nearest city only. As I can probably help guide you and your GP to a referral to an actual PsA specialist as you can’t see this one again, that’s for sure.

Hey Poo. Thanks for your thoughtful reply. The more I think about it the more I think it’s nonsense. I’ve been offered a follow up appointment with another consultant on 26th July!!!
Just been on a quick break in Europe and the pain I’ve been in ie feet, hips has been pretty bad. Walking around like an injured snail.
I live in East London and any ideas you have would be much appreciated as I’m feeling pretty down about it unsurprisingly

Have you googled the guy you’re seeing in July for any cogent interest in PsA? You’re looking for published research in which he is the author or co-author, or being on a NICE committee about PsA meds, or talking at PsA conferences. Get any of that on google (it means going beyond the first few pages) and then you might be seeing someone sensible. Meanwhile I’ll bounce back with some suggested names for you.

Hi again

Here are some names which might help. They are accurate to last year but of course NHS consultants can move about too.

Dr Robinson and Dr Kaul (he’s a serious PsA expert) - St Georges Hospital London.
Prof Kirham - Guy’s Hospital
Dr Benjamin Ellis - Hammersmith Hospital
Prof Hassan Tahir - Royal Free
Dr Borg - Southend
Dr Wing - Watford

Poo you are an absolute star. Thanks for taking the time to do that for me.
I have managed to speak to the department and get an appointment on 7th June with a rheumatologist I’ve seen before. If that is as unproductive as the last one I shall revisit your list.
I know someone who really rates Dr Tahir :grin:

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Best of luck. Hope the appt on 7 June is a lot more coherent.

Hey @Flin, I’m just following up…any good news to report? How was your June 7 appointment?

Hi Amos. It was pointless tbh. But thanks for asking. Saw the underling of the consultant and he clearly wasn’t going to go against his boss’s decision. Told me I have enthesitis, golfers elbow, and offered steroid shots in Achilles, shoulder and hip. But PSA isn’t active apparently :rofl::rofl:
When questioned he wouldn’t look at me and ignored all the nail pitting and psoriasis.
I have escalated the situation with hospital complaints department who were also amazed at all this and are instructing an independent rheumatologist to see me. How do these people get into practise?
How are things with you?

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Sorry to hear that things are not working yet for you. It’s kind of important as stopping the progression is part of the treatment. I’m pretty frustrate with just the way things are in the gap of waiting for my new biologic to kick in. It’s only been 2 weeks yesterday since starting Taltz. My psoriasis flare has tamed down for the most part but yesterday I had joint pain worse than ever. Both hands were almost useless and hurt just having them hang by my side walking. Some new “clicking” sounds and locking on a few fingers which is concerning. Every time I try to go from5 to 4 and 3 mg of Prednisone, my body chews me out. Oh well…I’ll know more in 2 months I guess. But for now, life is pretty painful…all over!

All those are fairly clear signs taken together with psoriasis and nail pitting that you have active PsA disease. Be sure PALS know who to instruct independently as they’ll know sweet nothing about PsA either.

Remember the steroid kickback eases off after a couple of weeks so the ‘chewing out’ level is body temper tantrums at steroid reduction rather than what your active disease is actually at. Also Talz like Cosentyx and more interleukin biologics can take some months to get going. With Cosentyx and me it was the end of month 8 that it took off marvellously. Talz is the sister med to Cosentyx.

But the body tantrums seem to hit all of the joints that have a history of being caused by enthesitis. When psoriasis and joint pain accelerate coming off of prednisone it sure appears to be PsA that is acting up when unrestrained by an anti-inflammatory.

Your body is also craving the higher dose of pred so that’s why literally everything inflames again. You went through this coming off pred the first time. Most joints will have an enthesitis site too. Can anyone also prescribe you a decent NSAID like celebrex or etoricoxib/arcoxia? That might be far more rational than playing the pred game.

Good thoughts…it seems that Celebrex has fallen from grace and they seem to be avoiding anything but short term use. Part of my reason to get off of prednisone is that I seem to get bad headaches 2-3 times a week if on 5 mg or more. Never used to be that way.

Repeated or long term use of steroids can throw up all sorts of weird issues even at relatively low doses too. Any prescribed NSAID should help better, people I know are precribed Celebrex, I take Etoricoxib, others are prescribed Naproxen and there’s others that I can remember the name of. Which one it is doesn’t actually matter that much, once you take one instead of always jumping back on steroids. Remind them to also prescribe you a stomach protector like omeprazole or any of the others of a similar ilke.

And interestingly, I have to severely limit my use of NSAIDs for that exact reason. So frustrating trying to manage side effects

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