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?

Bump, anyone?

I'm up for that! Diagnosed just over two years ago - psoriasis diagnosed 30 odd years ago in my late teens. Just a patch on my scalp, it flared on and off over the years but hadn't bothered me at all since the mid 2000s - then it flared up massively in 2020 and wouldn't go away. Joint pain followed, then swelling and worsening joint pain. Currently on Cosentyx, having failed more meds than I want to list! Five months in, and I think it might be helping. Hard to tell, but fingers crossed.

I know what you mean about the groups! They can be useful, but also rather scary. I try and remind myself that nobody posts to say they're doing ok and bimbling along with a few blips..

How are things going with you at the moment?

A more positive story from me - I have psoriasis and was diagnosed with PA a few years ago due to a painful and swollen toe. The pain subsequently affected my knee and heel at other times but has completely gone for years now.

Hi both.
@Flowersbutpain do you take any meds as prevention?

My only bouts of psoriasis are scalp psoriasis as a teen, and randomly on one of my ring fingers as a teen too. I'm 35 now.
Never really had any other issues until the last couple of years, I've been getting red flaky skin around my eyes, only once a year or so, which the GP diagnosed as eczema via an online consultation but I'm now wondering if it is/was actually psoriasis.

However, since about the same time this started, my nails started getting really bad. I was blaming wearing gel nails, even when I lost two whole fingernails.
It was only after about two years when I realised it was likely nail psoriasis, that I started reading more about it and was led to a link for PsA.
I then started realising my severe dry eyes that I'd been suffering from, plus my lower back pain and sudden onset of other joint pains, could all be related ☹️
I went to the GP last January with these concerns, was referred to a dermatologist for my nails and sent for pelvic Xray. Nothing came back in the xray.
Over the next few months I was back at the GP about pins and needles in my hands, so he linked this to my dry eyes and was worried I had MS, so was sent for an MRI, which came back saying I had herniated discs so was referred to a neurosurgeon.
I went private, the neurosurgeon said the NHS MRI had been over-reported and it wasn't herniated discs, so was referred to a neurologist to look into why I had this lower leg pain and pins and needles, and also sent for physio. Neurologist couldn't find any issues after two lots of nerve conductor studies, both hands and legs, other than mild carpal tunnel (again can be caused by PsA?)
In all this time, both the physio and neurologist were asking why I hadn't been referred to a rheumatologist. I just said I didn't feel I could walk into my GP and tell him how to do his job.
In the end the neurologist wrote to my GP suggesting it was an inflammatory arthritis, especially after my nail psoriasis diagnosis.

Private rheumatologist sent me for ultrasounds, X-rays and a (third!) MRI.
Literally only the ultrasound found an issue, mild inflammation in my finger joints.
They did confirm however that despite only showing in my fingertips, my other joints could still be mildly inflamed but not enough to show on scans (yet).
So have now been referred to NHS rheumatology who I'm seeing in two weeks time.

Sorry for the long post, just wanted to share this as I read so many people have so much pain before they get diagnosed and that's what leads them to getting the actual diagnosis in the first place.
I feel a bit of a fraud at the minute, as yes I have pain in my joints but it's so mild right now, it's my nails and eyes that led me to getting checked. I've lost three nails over the last two years, it was so painful but I was more concerned about how they looked that I felt it was just cosmetic and I couldn't complain. It's only when I spoke to others about this concern that they reassured me that ails are a body part too and therefore we shouldn't just be losing them!
Everything I read online, they were all diagnosed after being bed bound!

@YourSpleenIsDamp were you put on Methotrexate first? How did you find it?

<waves>

I do walk with a stick and use a wheelchair outside the home, diagnosed at 26, 30 years ago.

DH has been on Methotrexate twice in is life to help.

First time 9 months and then 5 years later it was more like 6 years. A local friend tried every medication and finally biologicals worked for him.

There are good treatments out there but I suspect it's a bit of a postcode lottery.

I was diagnosed in 2021. This was due to weird discomfort I get in lower arms and legs. Feels like soft tissue pain. I do have a bit of ache in one toe. I actually think I have been mis diagnosed. I take no painkillers and one gp seemed to think the illness shpuld have progressed over the last 3 years. I do get dry skin on ear lobes, eye lids and over freckles/moles on my back but whenever a gp looks, they say it is just dry skin.

I was diagnosed with PsA when I was 19, and have been on various medications over the past 20+ years. I’m unusual in that I don’t have psoriasis itself (though my dad did), just the joint problems.

In general, it’s been under control for most of that time. I’ve had a couple of bad flares where my joint inflammation has got worse - I went on Methotrexate when it happened a few years ago, came off it after a year due to side effects, and I’m now on the biologicals which keep it under control.

Methotrexate was my first med, but it wiped me out - I stuck at it for five months, but couldn't tolerate the side effects. Shame, as it really helped my joints, and I know lots of people get on fine with it. Then I had an allergic reaction to leflunomide, which wasn't great but did mean that I qualified for biologics! Now on Cosentyx, which I'm tolerating fine - it wipes me out for a couple of days after taking it, but it's only once a month, so that seems doable. Not seeing much benefit from it yet, but I've been told it's a very slow burner. Fingers crossed!

I was diagnosed back in 2011 when I was in my mid-twenties although had symptoms in my late teens which were dismissed (although I was diagnosed with psoriasis). I've been on biologics for most of the last decade having tried and failed on methotrexate (messed up my liver) and sulfasalazine (allergic). I was on Humira until 2019, had a six month break in the last trimester of pregnancy and then first few months PP but had a big flare and when back on it. Unfortunately, it didn't work the second time round so I switched to Cimzia, which also didn't work. I then had to wait 6 months for funding for another drug and had a huge flare but it settled within about 2 weeks of starting Taltz/Ixekizumab which has been a wonder drug for me although I am constantly ill due to the impact on my immune system.

I have some permanent damage in a couple of joints due to the impact of the flares and periods where it was untreated but, on the whole, my life is entirely normal. I need painkillers a few times a month but that's it and my skin is totally in remission.

My old consultant once told me that PsA (and RA) get a lot of funding for research because - and I quote - a lot of rich Americans suffer from them so new and effective treatments emerge all the time.

Great idea. I was diagnosed with PA about 25 years ago - that and the psoriasis itself were triggered by chicken pox in my 20s. Psoriasis mild and only a few patches, but PA was affecting me through constant aches limiting what I felt able to do and that keeping me awake at night so I've been on sulphasalazine for 20+ years. I was also initially on slow-release ibruprofen but came off it to get pregnant and never went back on it, though occasionally take some ibruprofen if PA having a bad day. But the sulphasalazine has basically enabled me to just get on with my life for the last 23 years without any major constraints. Only side effect is yellow/orange colouring of everything that comes out of my body (so yellowing contact lenses, staining of toilets, midwives who kept telling me I must be dehydrated), which is a small price to pay.

Hi,
I was diagnosed with inflammatory arthritis in 2010 and it swaps between diagnoses of RA and PsA (mostly based on what biologic meds my lovely Rheumatologists have wanted me on)
I have been on methotrexate mostly since 2010 with a gap for a couple of years TTC/Pregnancy/Breastfeeding.
Have tried lots of biologic meds (there are lots available!) with varying levels of success- I was well controlled before coming off mtx to ttc but then the medication that was working stopped working.
I have had 2 hip replacements and my ankles and knees have been affected since it started. I cope ok. Limp a bit, can't go for walks like I used to but work full time.
Current drug that seems to be working well is Cosentyx (along with mtx) I have high hopes and have been able to taper the steroids I am on and determined to get off them this year!
Until recently I had no signs of psoriasis but have a patch on my inner thigh that I think could be it.
Good luck getting it under control and not seeing much damage. I am a difficult case of arthritis that is quite resistant to treatment and many many people do much better!

I was diagnosed with PA in my early twenties but had had scalp psoriasis since I was about 14.

I have tried lots and lots of medication over the years. All of which I have been lucky enough to have tolerated really well. Sulfasalazine worked for a while, then methotrexate was added in. After a while that combo started to not be as effective and I was fortunate to have a rheumatologist that put me on the new - at that point- anti tnf (biologics) that were just coming out. These were life changing and meant i went from being on 8 co-proxamol a day and still in pain, using wrist splints and a walking stick (which I hated as I was in my 20s) to walking aid free and only needing painkillers ad hoc.

I’ve been on etanercept for about 20 years now. They still work but I have needed to add in other meds like leflunomide or methotrexate at various points in the last 20 years.

As I’ve got older (nearly 50 now) I have found that I do need to use some aids such as walking sticks - although I prefer crutches as I find them easier to use - and splints. However, a combination of getting older (and genuinely not caring what other people might think) and being able to buy myself some really funky crutches (would recommend a website called cool crutches though it’s not cheap) has given me the confidence to just ‘style it out’ as my teenager would say.

PA hasn’t stopped me working and doing lots of the stuff I would like to do, I’ve learnt to manage the pain and I think the most liberating thing for me was being confident to accept that this illness was part of me, would always be with me, but didn’t define me if that makes sense.

At the moment my joints are the least troublesome bit, my skin is quite bad but I’ve been prescribed a foam called Enstilar which appears to be amazing so far. For daily moisture I use ‘sympathy for the skin’ from Lush. It’s very soothing.

Hi @florenceandthemac glad you are a lot better at the moment.
I haven’t had any medication for the PA. It seemed strange to me that it moved around my body from
toe to knee to heel but the private rhematologist said that wasn’t unusual.
Touch wood, I have no symptoms of PA at the moment.
Psoriasis drives me mad though

Hello!

I was diagnosed with PsA in October '23 after starting to get symptoms post-pregnancy (had my son November '22). Started as pain/swelling in my second toe on my right foot but very quickly spread to pretty much every joint in my body as well as Psoriasis on my elbows/knees/scalp over the course of about 4 months. I honestly felt like I couldn't move some days because the pain was so awful.

I was very lucky to be seen relatively quickly by a Rheumatologist (referred by my GP in September and my first appointment was in October!). I'm currently on sulfasalazine, I've been taking it since November and it's finally starting to kick in I think/hope! I really started noticing a change about 2 weeks ago and genuinely feel so much better even though I'm still not 100% pain free by any stretch. I'm also taking celecoxib as/when needed, which for the past couple of months has been pretty much daily.

To be honest the whole thing has completely thrown me - I've never been 'unwell' before in my life and am turning 30 this year, it just feels quite daunting to be living with this condition for the rest of my life! At the minute I can't imagine feeling 100% 'better' again but I've been assured by my consultant that we'll find the right cocktail of meds to get me there.

I’m glad I found this thread, it’s helpful to hear others experiences.

I have been pushing for investigations for psoriatic arthritis. I have arthritis and there are changes on x ray. I have had periods of psoriasis type lesions over the years on my scalp and other parts of the body although never had a definitive diagnosis. There was one stage it was particularly bad, I had a derm referral then Covid happened and referral got lost in system. By 2021, it seemed to be better so I didnt follow it up.

My GP surgery haven’t been good (which is disappointing as usually excellent) and didn’t follow up on the x ray which was taken a year ago. When I presented with further pain this winter, they then told me that outcome of x ray last year wasn’t good but insisted there was no follow up needed, just to take ibuprofen. I luckily have medics in friends circle and they advised me on how to chase and that psoriatic arthritis is a likely diagnosis - I made a point of seeing the best dr in practice (imo) who has helped me with further investigations. Hoping to see a rheumatologist privately next week if can get an appointment

I keep meaning to come back to this thread, as the intention was for it to be a bit of support from people in the same boat as me. I have read everyone's replies but can't seem to find any words to reply, which isn't like me...
The thing is, this disease is so varied and everyone's symptoms are so different, I'm struggling to find somebody in the same boat! That may sound stupid.
@CatLady1994 Your last paragraph did resonate with me, it is overwhelming that this is here for life.

I had my NHS rheumatology appointment. I didn't go onto any meds, but she explained I can contact her at any time now should I change my mind. I just didn't feel my pains were bad enough to justify taking these harsh drugs.
I had an intra-muscular steroid injection, which I do think has actually made a difference to be honest, especially to the tendon pains in my lower legs. I've managed a couple of runs lately where I was actually pain-free (sort of). My legs felt like new legs!
However, as I was leaving the appointment, she did look at the photos of my nails (I keep them covered with builder gel) and she said the methotrexate would sort my nails. That nearly tempted me to go on it for that alone. But I'm just not sure.

@sashh I am really sorry to hear you have been affected quite badly. Had your symptoms got bad before your diagnosis?
I sometimes feel like I must mine must have been 'caught' quite early on?

Hi OP, and everyone else. I was unsure whether to join this thread as you can tell from my username (NC'd) that I am not in a good place today.

I've had PsA for just over a decade and to be brutally honest it has totally changed my life, and not in a good way.

Am on various oral meds and biologic injections but still have too many sofa days where I am no use to man nor beast.

I had to retire on an ill health pension in my early 40s and am pretty limited in terms of my physical capabilities.

I do have better days where I can be a bit more active but today has been a tough one, not helped by my sodding elbow joints keeping me awake half the night for the last few weeks.

I hope that I haven't been too depressing but you did ask 😀.

I am happy to join a little support group if you don't mind some good old moaning from time to time. But I completely understand if you don't. To be honest I am so bored of f*ing arthritis, and more bored of hearing myself moan about it.

Solidarity to everyone else suffering, and I promise not to be such a miserable cow next time I post.

Moan away @Havingashittyarthritisday I'd like to think I had somewhere to moan if I felt like you do.
I'm really sorry you're having a tough time.
What is your diagnosis story? I appreciate it was ten years or so ago. Did it come on quickly?

I’ve learnt to manage the pain and I think the most liberating thing for me was being confident to accept that this illness was part of me, would always be with me, but didn’t define me if that makes sense.

I'm on a 10 week (NHS) Pain Management Course, @Rainbowzebras, and this is pretty much their approach.

Also - yes to Enstilar. I find it very effective. Just don't forget it's a fire hazard around the Jo Malone candles!

Currently I am a sad creature of doom, because I have had a weird outbreak of what my dermatologist thinks is atopic eczema on top of my psoriasis. It's on my face, neck and chest so very visible, and I have 'Pain Club' tomorrow. Last week a woman (not from my group) stared at me in the waiting room. <sigh>

A lot if us aren't posting on Facebook because we're at work/gym/don't do FB!

....and now I'm off the bus, I'll reply more fully.

Because PsA is a systemic autoimmune condition, I think it is wise to seriously consider going onto regular medication before you experience some of the more unpleasant symptoms - steroids are great for a short period of time, but are more of a sticking plaster to get you through a flare or whilst something else begins to take effect & they have risks of their own; basically, you've chucked a fire blanket over a blazing fire, but you haven't actually put out the smouldering remains, which is where you get additional issues like joint involvement, spinal issues or other more unpleasant things in the longterm, such as a higher risk of (and it's a risk, not guaranteed)

Some cancers
High Cholesterol
Cardiovascular events including heart attack, cardiomyopathy and strokes
Tendon rupture
Plantar fasciiosis (worse than fasciitis)
Joint deformities
Spinal involvement
Being unable to walk because every joint in your foot is affected
A full body Psoriasis flare in every nook and cranny
Hearing loss
Massive immune system overreactions to infection

I did the MTX path and eventually went onto biologics, first Humira, then Cosentyx with the occasional steroid shot. Cosentyx is brilliant for me, I'm almost pain free almost all of the time, I'm not constantly injuring myself, I'm far less tired (no waking up feeling as if I've been round a giant cement mixer filled with broken lumps of concrete) and I am as emotionally stable as is possible - my main/primary sign of a flare is the inflammation completely buggering up my mood.

But most people can't go onto biologics unless they can't have their disease controlled by MTX alone. I see it as something that has to be tried (preferably by injection, as it is far easier and has lower side effects than oral) before being able to access things that are designed to work specifically on the particular part of the immune system that is buggering things up, rather than the blunt weapon that is MTX.

And it's nice having reasonable nails and skin, too, instead of feeling rather motheaten (the full scalp flare and hair loss/burning was not when I felt at my pretties) and also never knowing silence again due to tinnitus/hearing loss.

It's a pain in the arse (and everywhere else at times), but it's not like I can change my stupid immune system - it's clearly as easily bored as the rest of me and just as capable of dropping me in the shit as my hyperactive brain - but it's not my entire existence, it's just part of what makes me Me, just as liking Godzilla movies and playing bass when not twatting around on the internet or spoiling the cats is.

If I were you, I'd think about it a bit more and maybe try to get back to the Rheumatologist sooner rather than later. The first day you wake up and you don't actually have anything hurting, sore, flaking, peeling or just not feeling right is weird, but a pretty bloody amazing weird.

@NeverDropYourMooncup I started Cosentyx in November after a decade of different biologics never working enough(in combo with mtx) it did seem to work really well initially but I am trying to get off prednisolone which is hard and my joints have been a bit sore again since I got under 3mg (taking 2.5mg/day and hoping they will settle so I can continue to reduce) this is definitely the toughest bit as I had been on at least 5mg for the past 3 years so very hard to taper. Really hoping I can manage though and Cosentyx is the wonder drug i need!

@florenceandthemac - yes my arthritis came on virtually overnight. I remember it v clearly as I had got a new car and my feet felt odd but I assumed it was because the pedals were different. Then went out for dinner as it was DH's birthday and over the course of the evening my elbows and fingers felt hot.

Next morning my hands and feet were hugely swollen.

These symptoms started in August and I got a diagnosis at the end of December. Had various tests including carpal tunnel, along the way.

I was on steroids for the first 18 months or so I think. Have had a couple of steroid injections over the years and am going to ask for another one in my elbow.

Have been in Humira for 9 years or so and I am definitely better than when I was first diagnosed but it definitely hasn't been a "wonder drug" in that I had to stop working and am still pretty limited day to day.

My youngest DC started primary school in the September when it first came on and when the DC were young it was bloody hard.

I still get low thinking about how life for me and them would have been if I hadn't got the arthritis but then I snap myself out of it and realise that they are fantastic teenagers who are very caring and compassionate and that I am blessed to have them. Thankfully DH is a goodun too but I can't pretend that it hasn't affected our relationship.

I have never had psoriasis but started getting nail changes over the last few years which my rheumatologist says is likely to be an indication of it.

Feeling a bit brighter today as managed a good night's sleep.

Am v envious of you being relatively pain free @NeverDropYourMooncup. Can I ask how you got on to the Cosentyx? My Rheumatologist seems to think that I am still responding to Humira by testing for antibodies. But then again when I see him he never agrees with my score on how it's affecting me.

Sorry for the long post but sending positive thoughts to all x