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.

I'm hoping someone might be able to help me wrt whether my symptoms are possibly psoriatic arthritis.

I went to the GP recently as I had swelling around my achilles tendon. I also had on and off swelling on the top of my foot and some pain in the sole of my foot. She sent me for an MRI.

I have swelling in the ankle joint. Swelling and thickening of the crural fascia posterior to the ankle which extends to the Hagar's fat pad and the achilles tendon. I appear to have tendonitis in the achilles tendon.

I have some degenerative change in the first and second toes. I also have a bunion, which is potentially the cause of this. I have a long ganglion between the second and third toes. I have bursitis between the first and second toe.

I also have fairly mild psoriasis on my scalp for the past few years that I basically ignore as I got nowhere with the treatments.

GP sent me to the physio, who hasn't a clue what to do other than strengthening exercises.

Since the MRI, I have developed swelling in the fourth toe. It is the classic sausage toe presentation, which is why I was thinking it might be psoriatic arthritis. However, my GP is saying it is very unlikely as I would have erosion of the toe before the swelling happens and nothing showed in the MRI. Some of the stuff I saw online says the sausage digit can be the first symptom of psoriatic arthritis but I can't find anything that says whether erosion of the joint would have to have occurred before the swelling can occur.

My GP thought it might be cellulitis. It's not, as the antibiotics have had no effect. I will give her a call back next week but am just wondering if anyone knows if I can have the swelling without any erosion in the affected toe. She has referred me to ortho but I'm wondering should I push for a rheumatology referral too?

Interesting what you say about toe swelling. I’ve been told that I have exostosis at the base of my third toe. It’s swollen painful and doesn’t point straightforward anymore. Majority of the time I struggle to walk on it.

Never suffered with psoriasis before, then a few months ago developed this patch behind my ear. Steroid cream brings it down, but once I stop using it will flare back up. I’ve been referred to adult early inflammatory arthritis clinic with a 3 week wait rule whatever that means!

That looks painful @Beaniebeemer.

This is my toe.

Ouch @Beaniebeemer . I hope you get answers at the clinic.

@OchonAgusOchonOh my previous consultant who is a specialist in psoriatic arthritis would say your GP is wrong. She said that a fair chunk of people who have it get the swelling etc but do not have erosion of the joints. It looked as if I were one for some time and had the sausage toes a long time before one of my toes started to deform. It’s hard to tell from the picture but I think your nails look as if they may have psoriasis.

Pain in the Achilles and heel are also a sign of PsA. You need a rheumatology appointment at this point.

Thanks @Seaitoverthere. I'll call her next week.

I'm wondering would it make sense to see the ortho guy too so I can get a steroid injection for the pain?

I also have a hammer toe on the other foot. Would that be connected? That happened about 15 years ago though and I thought came about due to my bunion.

Definitely Rheumatology - I've had PsA for decades and there is practically zero joint damage, as my version largely confines itself to attacking my tendons. I do have swollen joints, but hardly anything bony.

Thanks @NeverDropYourMooncup

Sounds like my GP needs to improve her knowledge about PsA. She's generally very good and I know can't be expected to be expert in everything. I know if I do turn out to have PsA and will take that on board and expand her knowledge.

Another question - can a rheumotologist do steroids injections or is that the domain of ortho?

Also, have any of you found steroid injections helpful? The problem I'm having now is that because my foot is sore, I'm limping slightly, which is having a follow-on effect on my hip in the same leg and knee of the other leg. I figure if I can get the pain sorted, then at least I will be able to walk properly and prevent issues elsewhere.

Hi @OchonAgusOchonOh, my rheumatologist did steroid injections himself, so I’d assume they all would. I found they really did help with a flare-up.

Yes, they can. I prefer systemic ones to any into a joint capsule or fascia, though.

Thank you @EllieQand @NeverDropYourMooncup

That's helpful. Now just to persuade the GP it's a rheumotologist not an ortho specialist that I need...

My rheumatologist has generally done my steroid injections though the last one was fine by one of the medics at my gp clinic.

I assume my GP doesn't do them as she would have mentioned it when I was asking about them.

Tell her you want to explore the possibility of biologics. That isn't the first line of medication for Psoriasis or PsA, but asking specifically about it has to go to a specialist- and rheumatology tend to have more capacity/work with derms so people don't have to wait twice as long for two sets of appointments.

Thanks. I'll try that.

Although just thinking, given she doesn't believe I have can PsA without erosion, that may not work. I found a paper that said only about a quarter of people with PsA who have dactylitis have erosion. I'll point her towards that.

I've left a message for my GP.

I just realised I made it sound like she's not very open. She's a very good GP and will listen to my concerns. If it turns out to be PsA, something she couldn't be expected to be an expert in, she will, I assume, take it on board.

I've had my bloods taken and the GP will refer me once they come back next week.

Hopefully I won't be waiting too long to be called. I can always tell them I'm available at reasonably short notice for a cancellation as I live reasonably close by. That often speeds things up a bit.

Good luck @OchonAgusOchonOh . My consultant said it is about 50% who get joint erosion.

Thanks @Seaitoverthere.

I just want to be able to walk properly again.

I can relate to that. Medication has helped me with my foot a fair bit but unfortunately my hip is screwed and am awaiting a hip replacement. I have to stop anti inflammatory meds and am a bit scared what will happen to my foot in the next weeks whilst off them.

Yikes. That sounds worrying. Hopefully you will be OK and the surgery goes well.

The big problem with a foot issue is the pressure on other parts of your body. I can already feel problems starting in my hip and the knee of the other leg, presumably all due to poor walking. The issue only started less than 2 months ago. My usual approach of ignore and it will go away hasn't worked in this instance.

Am currently having foot problems like you @OchonAgusOchonOh - not arthritis as such but a variety of wear and tear according to my arthritis guy, so my current meds (methotrexate) not really helping. Had a MRI which resulted in a two page essay of all the various problems, was almost funny it was so long.

I took some super strong NSAIDs for a week which has helped but not totally so might have an injection next week.

Just wanted to suggest you see a podiatrist with one of those gait analysis machines - they will make you insoles to correct your imbalances - I think this has done a huge amount for my knees and wish I had had them younger, might have reduced the damage a bit.

Thanks @NormalAuntFanny
I'm already wearing orthotics. I've been wearing them for over 30 years now (not the same pair obviously 😁). They make a massive difference to back and knee pain.

Yes you are absolutely right, the knee of my bad foot gets sore which is partly due to the foot and also over compensating for other hip. That’s due to undiagnosed hip dysplasia but I think unfortunately the PsA has accelerated the destruction a bit. Definitely sensible to get on top of it. Fingers crossed not too long for rheumatology appointment.