Psoriatic arthritis progression? What to do?

Maya_m

Hello everyone! After a long time in pain I was diagnosed with psoriatic arthritis in June last year, had steroid injection in my hip and started on methotrexate. MRI at that point was showing inflammation in hips (right was the main problem) other findings were inconclusive. I was hopeful and really wanted to regain fitness and mobility having some restriction in my right hip. Also a good thing that I was given metoject straight away so no horrible side effects - actually none that I would notice. After some initial improvement, there wasn't much more despite increasing the dose up to 25mg. I was patient but a few months on and symptoms were getting worse. 6 months and the pain started to get overwhelming 8/10 and not letting off. Back to sleepless nights when nothing helps. From a bit of a limp, I now struggle to walk even short distances. Along the intense pain, it feels like my leg is just giving way every other step. The movements in the hip are very restricted and it feels like all structures around my hip are affected. My lower back now also hurts and my knee and lower leg. Lower leg pain is super bad and weirdly seems to be triggered by heat unlike my joints. The painkillers would barely touch it. It's all frankly terrifying. I finally had my rheumatologist review. (around that time I realised that the nurse prescribed 6 times the dose of folic acid, possibly affected MTX? Consultant prescribed 5mg, so clear mistake but it was denied as such) I was keen to understand the possible progress of the condition and the pain in my leg but the MRI request was rejected as unnecessary (???) I'm about to start a course of steroids, get steroid injection and continue on MTX combined with either Leflunomide or Sulfasalazine (I think I will go for Sulfasalazine to not increase the risk of infection?) I'm scared, exhausted and absolutely puzzled with the consultant not being interested in assessing any possible changes. And what's with my shin /tibia??? Any time I ask a very specific question voicing my concerns, I get a good dose of gaslighting ("you've got a lot in your head" and such). Anyone had similar experience in any part? What should I do???

PJoanne

Hello @Maya_m

Gosh, that is not good for the consultant to be telling you it's in your head. It is good that you are recognising that for what it is. Are you able to get a second opinion? As i understand it the NHS (I'm assuming that is your treatment provider) is not obliged to do this. Could you contact your GP to discuss a referral to another consultant? Also does your hospital/NHS trust have a 'Patient Advice and Liasion' (PALS) service?

I've had multiple scans on my hands, and they just won't do them without an interval of around a year in my local area, and I've had to fight for them! - So maybe there's a similiar policy at your hospital.

It's always worth giving the helpline a ring, the number is below.

best Joanne

Maya_m

@PJoanne thank you. It's always good to find some understanding, especially when you're lose hope and start doubting yourself. It is sad that we still have to fight for what seems to be the right path and way to improve treatment. Or just basic understanding of current condition. Yes, I am under NHS and after being initially impressed with how energetic and quick to act my consultant was, I can now see all the "standard process", "tick box" and obviously "the minimum necessary cost" approach, which I understand but when it's lacking patient's needs approach can be harmful. (it was mentioned that it hasn't been a year since my last scan)

I am considering transferring my care to another site (Bedfordshire Trust has two hospitals) but I'm just too tired and in too much pain to go through PALS to fight for MRI. And when I start steroids (tomorrow morning probably) the clinical picture will change and MRI will be less useful. So I guess I will not find out how bad it got so far.

jamieA

Hi @Maya_m

Much of what you've written in your first post resonates with me and my experience over the last four and a bit years. I was diagnosed with PsA in late 2020 at the age of 65. My first rheumatologist was less than helpful - telling me on my first consultation I had to 'suck it up' and on my second after I'd been seen by another rheumatology consultant who'd suggested I needed to be put on biologics that 'he wasn't going to take advice from some doctor I saw'. I then read somewhere that if you put your complaint in writing that it had to be included in your medical notes and got more traction. So after 9 painful months I did that and it seemed to work as I was then offered a number of services I didn't even know existed - as well as being put onto a biologic which has helped significantly. I take sulfasalazine, MTX and the biologic adalimumab as a 3 drug treatment. I changed my consultant in early 2022 and the new one is far more helpful and approachable.

Unfortunately I think we need be as assertive as we can be. Having never previously experienced a chronic disease I'd initially assumed the medics would be attentive and place my needs at the forefront of any treatment and that sadly didn't happen until I complained.

Early on I had an MRI scan of my lower back and as my shoulders, hands, hip, knee and ankle were the points of chronic pain I asked why they were doing my lower back. I was told the state of your sacroiliac joints is an indication of PsA. Afterwards they told me my right SI joint has been damaged by the PsA and sure enough it became painful.

I hope you get the right treatment soon.