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?

Our bodies let us down so badly at times, don't they?

Yes they flipping do !

I was diagnosed with RA in around 1999, re diagnosed as PsA with RA features in 2009 and then re diagnosed in 2022 as having both RA and PsA, which I gather is not that unusual. Since August 2023 I’ve been on a JAK inhibitor, Tofacitinib, which works well but with side effects that come and go. The medication scares me a bit, but I’ve run out of other treatment options. Either previous biologics or the RA have damaged my kidneys. I’ll be 65 in September. Happy to share experiences or just commiserate. For RA I recommend joining NRAS. For PsA I recommend joining PAPAA.

That sounds tough @HoppityBun .

I've been referred to a rheumotologist so now I'm just waiting for the appointment. Unfortunately I could be waiting a while. There are 4, one of whom I would get to see fairly quickly but my GP doesn't rate at all. I think I'm better waiting to see a good one.

GP phoned me yesterday to tell me my bloods were clear and check I would prefer the referral to the one she's referred me to. I'll call them in a week or so to see how long an appointment will be.

Good Luck @OchonAgusOchonOh I think it's worth seeing someone good, I really like my guy and hope he doesn't retire before I croak it!

I had several appointments before starting treatment and now have changed to humira have had several more. It's good to feel you can discuss everything with someone who knows your case.

Thanks @NormalAuntFanny

Morning, can I join too!! Diagnosed with PsA about 6 years ago. Started with shoulder pain that I couldnt get rid of even with many physio sessions, then tendonitis in Achilles, swollen right index finger, fluid around knee, generalized pain and fatigue. Bloods all normal but I had psoriasis so GP referred me to private rheum and he started me on methotraxate.
Lately I feel like meds not keeping it under control. I have a lot of pain in hands and wrists (wear splints at night for carpal tunnel), on an off pains around body, headaches and tiredness. Feet giving me trouble, getting bunions. I got inserts for shoes and it is helping.
Worst pain I have is in buttocks, down side of leg and lower back. I have a rotated pelvis and sit a lot for work. I do yoga, walk 1-2 hours every day and stretches. I dont know if the pain is from rotated pelvis/piriformis syndrome or arthritis.
Just had appt in public system and got xrays on hands, feet and pelvis and full blood work so I will know more in 4 weeks.
Nurse said if evidence of ankylosing spondylitis I will be put on biologic as mtx no good for it.

So it looks like it will be months rather than weeks before I see the rheumatologist. I have dactylitis and swelling at the back of my heel, below my ankle. I've had the achille's swelling for over 2 months and the dactylitis for approximately a month. If I do have PsA is there a possibility that any of that will go away on its own without treatment? I'm concerned that I may have PsA but if I end up with the symptoms disappearing themselves before I see the rheumatologist, it will delay treating it and from what I have read, early treatment is essential to minimise damage down the line.

Unlikely, but take photos just in case, along with any you might have of your hands in them prior to all of this/rings that are too small/etc.

Thanks. I'll do that. I do also have the MRI report but that was from before the dactylitis.

I had psoriasis patches on my aching joints. When I went to the doctor many years ago he laughed at me and said there was no such things as psoriatic arthritis.

Lovely. I hope you managed to see someone more open fairly quickly after that.

I got given naproxen which deals with aching joints . I wonder if mine is stress related as when I left a stressful job my skin settled down and I've only got a small patch on my elbow now where as before it was bad on my knees and I had blisters on my foot and a few spots on my ear and the top of my neck .

Hope it's not too long a wait.

When I saw the specialist mine wasn't too bad at the time except for my knees which are worn and sore but when he took my history he was quick to say PsA which I hadn't actually heard of then.

If you can prepare your symptoms and dates and write them down it does help I think. The first time I was there for ages and I hadn't really prepared my story properly.

Didn't actually start a treatment for ages because I was happy with knee injections and didn't want to think I had a proper disease.

It's the combination of factors I think, I have had positive and negative blood tests for example and good and bad skin days.

In any event the beginner treatment, methotrexate, is I think the same!

I just got the appointment letter this morning for October. I did call and ask to be put on the cancellation list so hopefully I will get seen sooner.

That's good advice re writing down the symptoms @NormalAuntFanny I will do that.

Has anybody been through multiple biologics with no joy? I'm 4 weeks in on number 5 and losing the plot. On holiday and can barely walk.Only one has worked really well ( then stopped when I had to take a break while sick)

I hate oral steroids with a passion but it's the only thing that helps at the minute. Sorry for the moan, just unbelievably fed up, as I'm sure most of you are, and I hate moaning about it in real life.

I haven't officially had a diagnosis but last year suffered for about 9 months with the bably and ring finger of my left hand - would go funny colours in heat changes and sore and stiff joints, almost felt like I should band them together in a splint to stop movement as it hurt. I ended up having a pumlonary embolism in Jan and was put on apixaban to thin the clot. I noticed one of the good side effects was that my fingers no longer hurt - I found this study https://pubmed.ncbi.nlm.nih.gov/32141012/

Obviously no one wants to go on blood thinners unnecessarily, but I thought I would post as if someone is on warfrin anyway, for example, you might want to see if you can switch over to see if it helps? I was only on thinners for 3 months and have felt it starting up again since stopping - it's milder but getting worse each week.

Sorry about the embolism , but that's really interesting about the blood thinners!

Not posted for a while. I've been dx with PA for about 13 years now.
I've ended up with some damage to my collar bone due to the PA.
Had surgery yesterday so now home recovering with padding, sling and my lovely attractive compression stockings. Not an overly quick recovery time really but hopefully will be worth it. Have been in a lot of pain since October due to it so desperately been looking for a pain solution - and hopefully this will get it sorted 🤞🏻

@mrstambourinewoman I hope you find one that works for you soon. It sounds tough

@PanicAttax that's interesting. Hopefully you will get the joint pain sorted.

@Longmawishing you a quick and successful recovery.

Hi, joining this thread on behalf of my DH, who’s just seen a rheumatologist who thinks he might have PSA. He wasn’t sure whether it’s this or reactive arthritis. My DH doesn’t have psoriasis, but does have some dermatitis.

Quite scared about what the future holds. Is it possible to control PSA so that it doesn’t degrade and affect your mobility in the long term? He’s only 40 and we have to small DC.

Hi there, in my experience the treatment does stop it getting any worse - and also takes away the pain.

Nothing will make joint damage better again so the sooner you start the better. I wish I had taken my own advice sooner!

The treatments can have side effects though so might take some time to get the one which suits.

Sorry this is long as I have had Psa and psoriasis since I was 16 and am now 64.
I had a brain haemorrhage at the age of 15 which triggered psoriasis. This was 1975 and the only treatment then was coal tar ointment. It was horrible. Smelly and stained everything it came into contact with. The only other cream was Betnovate, a mild topical steroid cream which could only be used very sparingly on my facial psoriasis every three days.
At the age of 22 Psoriatic Arthritis started in my right shoulder and ankle. Surprisingly both the psoriasis and Psa disappeared when I was pregnant at 27. It returned with a vengeance after DD was born. It spread to other joints and I was given ultra violet treatment on my shoulders in 1984 and radiotherapy on my ankles in 1988, aged 28. Neither worked. Only anti-inflammatory tablets worked. Life was a big struggle. However my psoriasis did not return as bad as before after the pregnancy.
When I was 36 my DS was born. Again the psoriasis and Psa vanished when I was pregnant. After the birth I was hospitalised with what seemed to be a DVT in my left leg.
However it turned out to be the onset of really bad arthritis in my knee. This led to lots of scans and the prescription of Sulphasalazine and Methotrexate. I still take both now, 28 years later. It works reasonably well

I also had to stop taking the anti inflammatories as they were making my stomach bleed. I don't recall what I was given instead. However my knee got worse and worse and I was told I would need a replacement after I was 60.

About 3 years after the knee problem started I had a synovectomy and arthroscopy to reduce the thickness of the joint lining, as it was ballooning up with synovial fluid. I was told that the surgery would probably need repeating after around five years as the lining would regrow.
About 6 years later I was having to have the knee aspirated every 6 months as it filled with fluid and I couldn't bend it. My rheumatologist injected steroids after the aspiration which helped for a few weeks. I was on continuous co codamol by this time as nothing else touched the pain in my knee. Fortunately the Methotrexate and sulphasalazine was effective on the rest of my joints.
In 2020, at 60, I was told I needed the knee replacement. Due to Covid that didn't happen until May 2022.
Two years on from fhe knee replacement my knee is fine. The rest of my joint pain is fairly well controlled by the Methotrexate and Sulphasalazine. I take paracetamol and the occasional co-codamol when I have a flare up.
Although my pain and inflammation is mostly under control my joints are knackered so I limp and need an orthopaedic insole in my right shoe to correct my gait.

Bloody hell @Oneblindmouse hope that you're at least fairly pain free now

You have been through the wringer! Glad it's mainly under control now.