A thread for those with psoriatic arthritis?

[florenceandthemac]

Just wondering if anyone would be interested in a thread for PsA?
I'm newly diagnosed, not on any treatment yet as I was diagnosed privately and am waiting to see my NHS rheum in the next two weeks. My symptoms are only mild so far (I have very severe nail psoriasis though).
I'm in a PsA group on Facebook, and tbh, it's scary..! I feel like everybody who posts or comments is so severe, in wheelchairs/using walking aids, that I'm starting to feel doomed.

Just looking to be able to chat about symptoms/upcoming potential treatment, and also wondering if everybody suffers so badly?

Hi all, sorry to hear the struggles you’re all having. I just found this thread looking for information as DS (21) has just been diagnosed, or is on course for diagnosis.
His skin is terrible, poor love, so the GP has referred him to dermatology, and the pain and swelling in his feet seems pretty indicative. The GP said it was PsA but no rheum referral?
Should I be nudging for this? He’s at that funny age where they are supposed to take over their own healthcare but don’t really know what to do - add in ADHD and some mild LDs and I’ll need to advocate a little bit from the back seat while encouraging his independence.

Is it OK if I follow here?

Hey @PiggieWig of course you can follow.
Sorry to hear about your DS, such a shame he's so young.
I would have thought a referral to rheum was the norm, I'm not sure a GP can diagnose this. And even if they did, you'd need to be referred to a rheumatologist for treatment.
I'd definitely ask for a referral

I'm sorry to hear about your DS. I was a similar age when I was diagnosed and it's rubbish. I'd definitely push for a rheumatology referral. They tend to be a lot quicker than dermatology referrals and tend to treat it more aggressively.

When I had a review appointment, they asked my opinion on how things were going and I said that it was improved hugely, but not enough, and as they'd been doing steroid pulses every three months, the consultant added the antibody test.

The report back was no detected antibodies, but there was a low level of humira and inflammatory markers were rising, which they felt was a sign of my beginning to develop antibodies - combine that with the observed joint and enthesis inflammation with patches of plaques and they decided it was better to change straight away, rather than wait another few months.

Thanks for the warm welcome. I’m struggling to get my head around it all really..

The way it came on with DS feet sounds similar to the car pedal thing. I thought it was because he had new boots, and couldn’t fathom what the problem was. He was asking about gout because my mum suffers with it, but he’s young, active and extremely slim, so it didn’t seem to match.
It’s gone on for about 3 months now though and is agony when he gets up in the morning until he takes NSAIDS, then he can cope.
He works on his feet too, in a kitchen, so I’m hoping he can get some relief.

The GP has just prescribed him oral steroids but he’s reluctant to take them as he can struggle with being ‘radge’ as he calls it with the ADHD. He keeps it fairly well contained but it can be hard for him and he’s worried steroids will trigger his mood swings.

Hi everyone. Can I please join you amazing people.
I am currently in the process of being tested for this, after nearly 5 yrs of being passed around the nhs system and my gp telling me all my problems were due to my age ( I was 49) and my job (I'm a hairdresser), so what did I expect, I ended up in tears saying'more'!!!
I've had scalp psoriasis for 16 yrs since I had a hysterectomy due to endometriosis (leaving my ovaries) but never really bothered doing anything about after several treatments failed to make any difference. My feet, hips and hands started to be problematic around 5 yrs ago but as I said I was fobbed off, when I eventually went to the doctors, then COVID hit, I stopped working and so did my body, I was in so much hip pain, I was having to crawl up the stairs, and could barely walk, X-rays came back clear, the nurse practitioner, said it was probably fibromyalgia so gave me amitriptyline, and co-didromol they did sod all but I thought that was normal, on my meds review 18mths, she questioned why I was them? Denied all knowledge and referred me to the pain clinic, they did an mri, diagnosing, degenerative discs, upper and lower spine, arthritis and spondylitis, changed my meds, these worked for a while, fast forward to last yr, the pain is now chronic, I had an injection in my lower spine, didn't work, I'm developing, pins and needles, hot and cold sensations, etc, I'm referred to neurological for tests, another mri and nerve tests, as they think it's ms, this comes back clear, I'm referred back to the pain clinic, I'm taking 12 codeine phosphate and 8 double strength ibuprofen a day to get through work plus my other meds, so they change me to morphine patches, I'm allergic, back onto the other meds, I'm now desperate as the pain clinic say there is nothing more they can do for me and discharge me. I ring the gp, back to saying I think it's fibromyalgia, they referred me back to the pain clinic who eventually referred me to the rheumatologist, he's doing another mri, bone density under radiation and a full blood work, and a colonoscopy as I also have a really bad stomach.
I'm at the point of needing a walking stick, I literally do nothing but work and rest, I've put loads of weight on (although I lost a stone in a week when my stomach kicked off)I have alopecia where my psoriasis is extreme ( not great as a hairdresser) I don't recognise myself anymore, there have been times when I thought my husband would leave me.
Reading your stories at 2 in the morning sitting in bed unable to sleep due to the pain has given me hope.
Well done to anyone who got through that.
That's the longest post, I've ever written on here and so cathartic to get it all out. 😘

I've finally made an appointment to see my GP in 2 weeks. I'm convinced I've got PsA after years of just blaming myself for being overweight.
I've had psoriasis since my early teens, I'm almost 52 now. About 7-8 years ago I noticed I was stiff when getting out of my chair at work, sitting down too long, mid-40's possibly just age/overweight. My joints have been awful and HRT has helped a little but I get knee pain, lower back pain and upper spine is soooo inflexible these days.
I also feel like a rag doll when I walk, I dread the 5-6 minute walk into my office from the car because I end up breathless and sore, sometimes limping or just feeling like my legs are failing me or leaning my back against the lift walls when going up the life to straighten my hips (also have hypermobility and hips are particularly bad, I need to 'reset' my back regularly)
Anyway looking g at symptoms I'm almost positive it's PsA - I sometimes get swollen fingers, toes are ok, my knee just 'goes' for no reason and often I can't just stand for prolonged periods
Does this sound familiar to you guys?
I loathe going g to the doctors, always think I'm going to get bad news so I bury my head in the sand ... 🥺

Bumping as it's quiet on this board

Don’t get fobbed off by your GP either. Mine swore blind that my swollen toe didn’t look like psoriatic arthritis. Private rhematogist took one look at it and said it was classic psoriatic arthritis.

@Flowersbutpain - thank you, I won't!
Do you sometime look at your body, like elbow/knee etc and think they look strange? I'm sure it's the swelling that comes with PsA - a finger just looks classic sausage like - not necessarily with pain, but certainly feel my back/knees/achilles heel in the mornings etc are PsA - I checked my nails too yesterday and I tend to just have small dents, but they're on my nails, not hugely noticeable but there, multiple dents on the nails affected

Yes, it comes and goes on different parts of my body. My toe is permanently sausage shaped but no longer painful at all.

My big toe is keeping me awake tonight. Aaaagh.

I went to have the radioactive bone density test done today and they couldn't do it as I have stupid veins and they kept collapsing, so I've got to go back next month to have it done by an anaesthetic with a cannula, I look like a pin cushion.
Has anyone else ever had this problem? X

Saw GP and did blood work.
My CRP, ESR and ferritin all raised so I've been referred to the rheumatology team. I actually got a letter from my local hospital the same day (about4 hours) after he referred me!!!

Resurrecting this, as I think it would be useful.
I'm up and down with my emotions at the minute, and in turmoil with making the decision to go on meds.
Is everybody here on medication, and if so, which?
I've been offered methotrexate, sulfasalazine and leflunomide. Apparently methotrexate would be best for my nails, which actually cause me so many issues and a lot of pain. But I'm still so nervous about starting treatment, when my other pains just don't seem 'bad enough' to warrant the side effects of meds, but yet I know I should me on them to attempt to halt progression 🙁

Once the meds kick in, you might realise just how bad you felt by comparison.

You know those people who get up easily, exercise, work, shop, cook, clean and still have energy to do things in the evening and at weekends? That's apparently normal functioning - the only pain is feeling a bit tired at the end of the day (so they sleep well) and maybe a bit of post exercise ache if they did a heavy workout/run.

I'm on biologics after doing the mtx route, so it took a while to get the right things, but it was worth it to wake up and not feel pain from the second I opened my eyes.

I’m on prednisone, hydroxychloroquine, and biologicals, plus alendronic acid and a calcium supplement to counteract the steroids. In the past I’ve been on sulphasalazine and methotrexate. The only side-effects I’ve had were from the methotrexate

I would not be able to function without the meds as I would be in pain and have limited mobility due to pain from moving around. There’s also the preventative issue as well - living with your current level of inflammation could be making your joints worse.

And bluntly, the NHS is unlikely to be offered meds if they’re not necessary!

👋🏻 everyone. I've had psoriatic arthritis for 15 years now and am on my 5th biologic ( which doesn't seem to be working) Could not function without medication. So every few months I'm getting steroid injections until I can change medication.

So frustrated about it all at the minute.

I do understand not wanting to take medication, I'd love not to have to but that's it exactly OP, to slow down progression and damage the disease causes. And yes absolutely to PP, you wouldn't be offered them if you didn't really need them.

I started on Sulphasalazine (2020) which worked really well to start with and is one of the mildest drugs. I had a massive flair in up end of 2022 (could barely walk, even affected my ribs so I couldn't even breath properly without being in pain!) so they increased to the max dose (6 tablets a day from 4) which helped but didn't shift it, so got put on methotrexate summer 2023.

I don't much like Methotrexate for the fact it can make me feel a bit groggy and rubbish the next day - but the improvement in joints and skin has been massive, so overall worth it. Also side effects have been getting less over time.

I'd try something, as it takes a while to get into your system anyway, and you really want to prevent a big flair up as much as possible. It's awful and can do permanent damage. There is no cure, we only have prevention! You are in the fortunate position of being able to prevent a lot of damage as it's currently only mild :)

I've been on sulphasalazine for nearly 25 years with no horrible side effects. It enables me to get on with normal life with just some low level aching and any very occasional pain dealt with by ibuprofen. My understanding is that it's the least likely to cause side effects so I'd start with that if that's your main concern.

I have tried different combinations of meds, currently on sulfasalazine and leflunamide. I had to come off them due to an infection last year and it was only then that I realised the difference they were making!
I understand the bit about not feeling bad enough for meds, but actually once you feel the difference the side effects (if any) are generally worth it.
When I was trying different meds, the consultant was happy to change them if either they weren't working or I felt the side effects were not worth the benefit.
The meds have stabilised me, which means that the permanent damage to my joints should not get any worse - this is a good reason for not waiting until you feel terrible to go on meds!

I have been told that although my joints shouldn't now get any worse, the damage done already is such that I need multiple joint replacements. But still feel like I am not that bad and so feel a bit of a fraud!

Has anyone been on toxilizumab? About to start and just wondering if it's been beneficial for anyone? 5th biologic lucky? 😩

Can I join please? I was diagnosed October 2022 having to go privately for second opinion as first private rheumatologist wasn’t great and GP said I didn’t meet criteria for NHS referral. Saw a PsA specialist who was brilliant, transferred me to the NHS at her clinic and now I have transferred locally and feel that I am getting decent care finally.

Hip is shot as have dysplasia apparently and the PsA inflammation has destroyed it so am on waiting list for a replacement. Am on Sulphasalazine and after 6 weeks on higher dose I feel it is helping a little and my foot isn’t permanently burning and toes aren’t as swollen though unfortunately permanent damage now in one.

With hindsight I developed it after my second child but it was taking HRT in the hope that it would help joint pain that caused a huge flare and I have been bad ever since. Consultant said it is quite common for this to happen in menopause.

Ironically I used to work in a rheumatology department with RA patients on a pain study so have seen a large number of damaged joints. The biologics were just coming in as I left. It was the DMARDs and silver injections back in the day.

Hi, @Seaitoverthere, happy to chat.

Thanks @AutumnCrow , how are things for you at the moment?