Psoriatic arthritis

[AnnaMolly06]

I suffered with psoriasis for a couple of years in my teens that wasn’t really treated, Gp gave me a prescription for e45 and sent me on my way. It cleared up after I got really sun burnt on holiday and I hadn’t really thought about it until now, over a decade later.

For the past couple of years I’ve struggled on and off with painful swollen joints, bad toenails, swollen toes and now this year my psoriasis is back, mostly my ears and hairline but the odd patch on my thighs, arms and hands and I had a nasty bout of uveitis a few months ago.

Researching the uveitis made me aware that all of these things can link up to psoriatic arthritis and prompted me to go back to my Gp about my joint issues. The Gp has now taken me seriously and has put in a rheumatology referral and has asked me to go for blood tests.

Anyone that suffers with this, I just have a few questions.

At the moment I’m trying to manage the joint pain with 500mg naproxen twice a day but it doesn’t actually seem to be doing anything. Would I be ok going back to my Gp and seeing if there is anything else they can offer me? I kind of feel like, because I haven’t actually had a diagnosis, that a request for different/ stronger pain meds will be rejected.

Can taking naproxen alter the inflammation markers in my blood results? I don’t know why but I’ve always felt like, whenever I’m ill or in pain that people don’t believe me, and I’m concerned that if my blood results don’t show anything, that they’ll think I’m making it up or exaggerating the pain. I know it sounds ridiculous but after 2 years of putting up with this pain in my joints I’m so tired and down about it all that I kind of need it to be something that can be proved by blood tests/ xrays etc so something can finally be done.

Finally. How does the diagnosis process work? Can anyone tell me what other tests they had? How long it took from the first rheumatology appointment to getting a diagnosis? What medication were you started on?

I’m sorry this is so long. I’m a bit of a worrier and I like to be prepared and know as much as I can about what it is happening or is going to happen.
I know different areas have different protocols so how it worked for one, doesn’t mean it will be the same for the next but I think this might help me a little if someone doesn’t mind sharing their experiences with me.

Hi - not sure I can answer all your questions but can share my experience if that helps.

I have had psoriatic arthritis for 8 years with no obvious psoriasis, so my diagnosis journey will probably be different to yours. I had knee problems since my teens but these were diagnosed as something else so probably not relevant.

My arthritis symptoms came on really quickly within a couple of days. Had really swollen wrists, fingers and ankles and elbows. Went to GP who I think gave me NSAID - can't remember if Naproxen or something else. Then had to go back a couple of weeks later but nothing any different. Then had referral to Rheumatology and sent for tests for Carpal Tunnel syndrome (electrical stimulation I think - but these were negative). Saw Rheumatologist within 3 months I think - sorry not sure of how long. Was given Prednisolone and Sulfasalazine and had blood tests and X-rays. I think at this point they were trying to work out if it was Rheumatoid Arthritis which probably wouldn't be the case if you already have psoriasis but not really sure. I remember getting a final diagnosis on Boxing Day!! (Just where you want to be at Xmas) having had initial symptoms in August which gives you an idea of the time line.

Since then I had to have staged drug treatments until I was put on Humira injections (biologics) in the following June - my NHS trust has a pathway where I think you have to have tried all the other drugs first as Humira is v expensive. I came off the steroids after about 18 months I think but am still on Sulfasalazine, Leflunomide (both anti rheumatics I think) and Humira (now Imraldi but same thing) injections every fortnight. I still take Naproxen for flare-ups and have also had steroid injections into my wrists when I had a major flare up a couple of years ago.

I am better than I was in the first couple of years but it has had a major impact on my life in that I no longer work because I couldn't cope physically with that and my two DC who were infant age when it all happened. But please don't think that is the only outlook - I know others don't have it so severely and that for some people it is really well managed.

I have six monthly consultations with Rheumatologist but essentially now am just plodding on with flare-ups and adjusting my life accordingly. I am hopeful that I won't have too much actual joint damage because of the drugs being more effective and that I didn't wait too long but I don't really know if this is the case.

I'm not sure whether Naproxen affects the levels of inflammation - I guess it is an anti-inflammatory but my medical knowledge is not that advanced I'm afraid! I had to have monthly blood tests which have recently dropped to 3 monthly but I think these are to look at my liver health because of the Leflunomide and Humira? I am not allowed alcohol because of the Leflunomide so that makes sense.

Hope I haven't scared you too much - as I say, this is just my experience, and hopefully others will be along to share theirs. I wish you all the best, it is not easy and I hope you have some supportive people around you. If you have any other questions that I can help with please ask.

Hi, I've recently been diagnosed with PsA. I got the diagnosis on the first appointment with Rheumatology, and given a steriod injection to help ease pain and swelling the same afternoon, which helped, and I'm currently on sulfasalazine.
I don't think much shows up on bloods to diagnose PsA from them alone - but if the same as me, your rheumatology consultant will ask about your symtoms and any medications you are taking, as well as a physical exam to reach a diagnosis. I always worry no one will belive me - but honestly it was fine. Try not to worry and good luck!

I developed nail changes back in 2012 - lots of pitting in fingernails, mild onycholosis in my fingernails and severe onycholosis in one toenail. GP suspected psoriatic arthritis as I also had some mild achilles tendon pain. Rheumatology disagreed and said pain was due to my previously diagnosed fibro.

Went back to Rheumatology in 2016 after one psoriasis patch* developed and I had a flare up of joint pains. Rheumatologist told me she thought I had psoriatic arthritis due to nails and symptoms and sent me home with leaflets on methotrexate and sulfasalazine so I could choose which I wanted. However, x Ray's were clear so symptoms attributed to ehlers danlos syndrome which was diagnosed in 2013 and fibro.

*patch was never seen by a GP as I was moving house and had to wait 6 weeks for an appointment by which point it was gone. It was too close to my vulva to photograph (I didn't want a photo of that area on my phone in case someone saw it). DH has psoriasis and the patch looked just like his.

I am now waiting to go back to Rheumatology yet again. In december my left elbow became sore. In early Feb I developed a swelling on my inner elbow. GP confirmed it was neither tennis nor golfers elbow. Ultrasound cancelled due to Covid. Right elbow developed a matching but smaller swelling in May. By early June my left ankle was also a little swollen and I was struggling with bad heel and achilles pain. I have been limping and struggle to bend down to pet the cat. Nails have been pitted most of the time since 2012, but the onycholosis suddenly returned in all toe nails and most finger nails when my heel pain started.

Blood test was normal apart from slightly raised inflammatory markers. GP has now referred to rheumatology. Swelling isn't going down in either elbow, and sometimes I wake up from the pain and am too stiff to move. Also suffering with lower back pain and stiff hips.

I've been told to expect at least a 6 month wait to be seen due to long waiting lists pre Covid, plus delays caused by Covid.

GP won't prescribe me any anti inflammatories because I'm allergic to them, and as I have asthma I can't have the ones I'm not allergic to. So I just have co-codamol for it which I was on for EDS and fibro already.

OP tests I've had previously are:

Bloods
Urine samples
Xrays
Ultrasounds

Urine samples, bloods and x rays are usually done on the same day you see the Rheumy, and ultrasounds usually have to be pre booked in for a later date.

Xrays have generally been done on my hands and feet, and on one occasion my knees. Ultrasounds have been of hands.

No-one has ever scanned my back despite over 10 years of pain starting in my teens and a strong family history of spine issues. Mum has osteo in her spine and other issues and had spinal surgery last week, her sister's spine issues will put her in a wheelchair before long. Dad has osteo in his spine too, plus scoliosis and his brother has ankylosing spondylitis.

So this time I'm going to plead with my Rheumy for an x ray. My GP wanted me to have a scan and requested physio organise this last year when she referred me for physio but they refused. They're a private company who can do scans and in our area a GP can't directly order a scan, but they can refer to physio and recommend a scan, but the physiotherapist makes the final call.

Hi. Thank you all for replying.

Sorry I didn’t come back straight away, I’ve had a bad couple of days...... my scalp had been really itchy for a few days so I finally got the courage to have a proper look yesterday and it’s covered in small patches of psoriasis which I let bother me more than I should have done. As well as that my knees, which are the joints I’ve had most pain with so far anyway are worse than they’ve ever been. They don’t look too swollen but are very painful and hot and I’ve woken up today with really painful and stiff fingers/hands/wrists which is new (lucky me 🙄)

By the sounds of things, a diagnosis isn’t always as straightforward as I’d hoped it would be and the outlook definitely varies massively

@Tollergirl Don’t worry, you haven’t scared me anymore than I already was lol. I have 4 young children which obviously makes me worry for the future, thankfully I have a supportive partner and family though.

@Whatsissname One of my biggest worries is that people won’t or don’t believe how much pain I’m actually in. Like I try my best to get on with things and ignore it but the normal, usually simple day to day tasks are becoming more difficult and painful. I’m keeping my fingers crossed for a similar experience to you, I really don’t feel up to having to fight for a diagnosis.

@IWishTheBishopWell I’m sorry you’ve had such a shit time with it. I can’t imagine how frustrating it must be having to go back and forth like that for so many years. Do you find the co-codamol works for your pain at all? I’m really struggling to take the naproxen as it isn’t really relieving any of the pain and is making me feel sleepy and nauseous.

Again, Thankyou all for replying, it’s actually a relief to talk about it openly. My partner and family know that I’ve been referred and that a Pa diagnosis is fairly probable but don’t really know how much I’m hurting or how worried I am about it.

i’ve had psoriasis since i was a child. my joints started giving me trouble when i was 35. i’ve had a few knee surgeries, and had very weird bloods (chronic neutropenia) for a year or so.

things finally came together a couple of years ago, when i was 45. i now have a formal diagnosis of psoriatic arthritis and have problems with my hands and fingers, knees, back and ankles. i’ve had mri scans on all of me, and everything shows arthritis damage but not yet ‘enough’ to treat. for example my lower back is terrible, but the mri just showed wear and tear and mild damage.

i take methotrexate and an anti-inflammatory called Etodolac. i have a buprenorphine pain patch (20mcg/hr) that i change weekly. i also take pregablin.

i’ve just had my PIP reviewed and been awarded high rate mobility. it’s taken a long time to get it increased from standard. i can now get a motability car which will change my life. i’ve had a blue badge for about 3 years now.

since lockdown i haven’t been able to go for blood tests (no transport) and i can safely say i’m in the middle of a flare as my skin has broken out again (the meds usually control it) and my pain has been bad.

i’m 47 now. i struggle with pain and mobility. BUT everyone is different. your Rheumatologist should work with you to find the right meds for you. i’m going to ask about changing from methotrexate to a biological, as i don’t feel like i things are under control at the moment.

i hope everyone is doing ok. it’s a shitty disease, but there is treatment to alleviate symptoms - it’s just a question of hitting on the right one!

DH was put on Methotrexate and was able to come off it after 2 years, then after about 5 years it flared up badly again and went back on it for 3/4 years and just come off it again.

This time year he has massively changed his diet to a much healthier one and he now feels better than he has in a decade!

DH was put on Methotrexate and was able to come off it after 2 years, then after about 5 years it flared up badly again and went back on it for 3/4 years and just come off it again.

This time year he has massively changed his diet to a much healthier one and he now feels better than he has in a decade!

@RandomMess I have heard a few people say diet has helped them. I don't eat too badly but have quite a sweet tooth - even the aches and pains will struggle to get me off that even though I know I should try harder!

@AnnaMolly06 I think I have had a very easy road to diagnosis, and perhaps my symptoms all came together at the right time. But I think there is being a bit of an effort to improve things. I had to fill out questionnaires about how quickly I got treatment etc and was told it was great as I was going to be a big tick in the box for them

I also think I am lucky that I have been offered treatment before things have got too bad. Who knows how things will play out for me long term, but at least I am 'in the system'. My rheumatologist wanted me to go for an MRI to see the extent of any damage, but that has been cancelled due to covid.

I guess diet and lifestyle that optimise your immune system being as healthy as possible will, by default, help.

I'm sure there will be books out there that are very clear on what constitutes an immune system "healthy" diet looks like... could be brutal but worth it?

I guess diet and lifestyle that optimise your immune system being as healthy as possible will, by default, help.

I'm sure there will be books out there that are very clear on what constitutes an immune system "healthy" diet looks like... could be brutal but worth it?

@AnnaMolly06 - have a look at Versus Arthritis and Papaa, they have some good info on PsA. So does Patient UK - they have leaflets on psoriasis, psoriatic nail disease and PsA for patients, and for doctors which are worth a read.

Co-codamol helps most days, but doesn't seem to do much on bad days. I only take more than two tablets a day if desperate as it can constipate. I used to be on tramacet which was much better but was moved to co-codamol by a GP when I moved house and surgery. I took naproxen about 10 years ago and hated it (presumably because I was allergic to anti inflammatories and was unaware at the time) - it made my toes swell up. Don't be afraid to ask your GP to try something else if it doesn't agree with you.

Have you tried any topical creams? I can tolerate movelat for short periods as topical aspirin is less likely to set asthma off compared to regular aspirin. You might be able to use something similar for a bit of extra targeted pain relief? I'd ask your GP first due to other meds, and in case it affects the psoriasis on your skin.

Are they giving you anything for the psoriasis? It sounds painful

On food and diet - I've started following 'Arthritis Foodie' on Insta and Facebook - she shares good foods to eat when you have inflammatory arthritis. Her diagnosis isn't fully determined yet between RA and PsA. Versus arthritis posted an article about her last week which is how I found her.

I’ve just had my referral letter through for me to arrange an appointment. I had to ring as the online thing wasn’t working. The hospital I have to attend is arranging their own appointments at the moment due to Covid so no idea how long I’m going to have to wait for them to contact me, the person I spoke to though said it had been put through as an urgent referral so hopefully it won’t be too long.

I think I am going to ring my gp back and see if there’s anything else she can prescribe for the pain if it gets any worse but will definitely try a pain relief ointment in the meantime.

I will have a look at altering my diet too. Honestly my diet isn’t the best as it’s not something I’ve ever had to worry about before as I’ve always struggled to gain weight but I’ll try anything at this point.

I’ve not asked for anything for the psoriasis as until now it was only a few small patches here and there. I’m going to try a medicated shampoo first to see if that helps before bothering the gp with it.

I’ve been taking pictures of the swelling and psoriasis patches as well as keeping a diary of pain and other symptoms. I don’t know if will help when I have my first appointment but felt it might be a good idea as knowing my luck, the day of my appointment will come and I’ll have no visual symptoms.

Thanks again for all of your replies, I’ll take a look at the websites/ insta accounts that have been recommended.

I wanted to come on and say a few things. Firstly you don't always have high inflammation levels, I have been diagnosed a while now and only occasionally have high levels. In terms of diagnosis they have a list of criteria which includes family history, presence of psoriasis, joint swelling, joint pain, nail deformity and some others I can't remember.

By all means ask for more pain relief, although I tend to find it doesn't help that much. Once diagnosed you'll have access to a wider range of drugs which will help to control the arthritis and reduce pain.

my inflammation levels are always above the high range. i’ve just had a massive flare, but haven’t been able to go for bloods since shielding started. hoping to go in the next couple of weeks.

I have a majority of the listed symptoms, the only thing that I haven’t really noticed that much is heel/foot pain.
The last blood test I had was when I had uveitis and my inflammation levels then were very high, I’ve got my blood test booked for Wednesday and with how painful and swollen my joints are at the moment and the active psoriasis I’ll be surprised if they don’t show some inflammation.

I was a bit silly last night and got fed up of feeling dosed up on naproxen every night, so gave it a miss and had a few drinks with my partner, the standing for so long, late night, and lack of anti inflammatories means I’m really struggling today.

Do any of you have Raynauds along side your Psa at all?
I can’t really find much about it in regards to it either being linked or a complication so just wondered if anyone has any experience of having the 2 together?

I don't have any experience with Raynauds but often Arthritis will come alongside other conditions. I think there is often a genetic predisposition to these conditions and as arthritis is autoimmune it makes others more likely.

Don't worry about having no visual symptoms on the day of the appointment. I rarely have swollen joints and my consultant has never seen them - they will look at the bigger picture. Make sure you keep active, I can only manage gentle exercise but walking often reduces symptoms. I also have regular massage and although this doesn't directly involve my joints (or tendons), muscles often tense when you are in pain and this helps with over aches.

@fucknuckle is pregabalin helpful? I could do with something like this that helps with enthesis as I struggle with tendon inflammation more than my joints.

I've had Raynauds for years, as has DH. DH has psoriasis, but no PsA. I also have ehlers-danlos syndrome, fibromyalgia and suspected Sjogrens syndrome.

My raynauds is quite severe but I have low blood pressure related fainting and so can't take any meds for it! Most people can take meds for it if needed. Take pics of it if you can, my original rheumy, who I didn't like, wouldn't consider raynauds as a possibility without pics. He also said I didn't have ehlers danlos as I don't have stretch marks on my back. I got diagnosed with EDS by a specialist clinic 4 years later.

Raynauds is quite commonly comorbid with autoimmune diseases like RA, Lupus and Sjogrens. So I don't see why it couldn't exist with PsA. Raynauds is quite a common condition as well so will occur alongside all sorts.

I realised yesterday that I can't move my left ankle as much as the right, being hyper mobile I can normally 'roll' both ankles at speed, but my left no longer moves as much or as fast

Sorry I should have said, I was diagnosed with raynauds years ago. Will definitely mention it to the rheumatologist when I see them, if my gp hasn’t put it in my referral. I’ve never been given anything for it though, just told to make sure I keep my hands and feet warm.

Good to know I don’t necessarily need to have visual symptoms on the day of my appointment. I’m going to carry on keeping a diary of my symptoms and make sure I write down key points to take with me when I go as I always get nervous and flustered at medical appointments.

I was given a list of exercises to do when I first complained about the pain in my joints a couple of years ago, so have been trying to do them and I’m up running around after a very energetic 18 month old all day everyday. As much as I’m not actively getting out and exercising I’m trying to make sure I do keep the affected joints mobile.

@IWishTheBishopWell it must be so frustrating going from one extreme to other like that .

I really hope I get a nice, understanding rheumatologist. I’m not sure I could deal with someone not taking me seriously, I’m getting so fed up now I just really want it sorting.

I just had a phone call from my GP to say that Rheumatology have rejected my referral and don't want to see me!! Apparently it's because I've already been diagnosed with fibromyalgia and ehlers danlos syndrome 10 and 7 years ago respectively.

They have suggested physiotherapy (which I'm already having) or a referral to a pain clinic to manage my symptoms. I saw a pain clinic back in 2014 but wasn't able to do the course they offered me as it was involved taking a week of work and I was in a temp job so didn't have annual leave to take. I also found it made me feel worse when I was at the pre course session as they kept talking about being in pain and reminding me that I'm in pain. A bit like when someone mentions nits and your scalp suddenly starts to itch.

I feel really crushed that they don't want to see me. If I do have arthritis then I need to know so that I can get the right treatment. If it's not then at least I know and can ask what is is that is causing my elbows to swell, and why my nails are coming off. Some of my toenails only have half of themselves left

I should have added that my GP is going to go back to Rheumatology and reiterate my symptoms and see if they still say they don't want to see me or not.

@SheldonSaysSo1 it does. i also have the pain patch, but when i was transitioning from Tramadol to my Buprenorphine patches the pregablin kept me at least slightly comfortable.

it’s a bit confusing in my case as i’m also prescribed it off-label for anxiety. i’m on a total of 19 medications for mental and physical illness. what larks, eh?

Sorry to hear you are suffering so much.

I had a provisional diagnosis at my first rheumatologist appt - I had had bloods and xrays by then. It was provisional as I needed a psoriasis diagnosis based on small patches behind my ears. At various points I have had naproxen and short term steroids (initially while waiting confirmed diagnosis and at a flare) as well as a steroid injection during a flare of pain symptoms (given by my rheumatologist). Long term, I was initially treated with methotrexate, then had sulfasalazine added and dose adjustments before going onto biologic treatment (anti-TNF, adalimumab). The first treatments did help but I had problems with liver function tests and then an increase in symptoms. The biologic treatment has really worked wonders.

Be prepared for what feels like a lot of admin to start; even once in treatment blood tests are really frequent to start. But I hope you have a diagnosis and relief soon.

Oh and I hope you get an understanding rheumatologist. I really like mine; she tells me I underplay my symptoms and am too stoic (probably true), and takes any concerns/pain I have seriously

Hi sorry I haven’t been back.

So I’m still suffering and still waiting. The hospital have confirmed I’m on there waiting list but can’t give me any idea of how long the wait might be and said that they’re still only doing video appointments.

I’ve been looking at going private for my first appointment but at £200 it’s something I’m going to have to save for, for a couple of months so I’m hoping the nhs appointment comes through before that.

My symptoms have unfortunately got worse..... my elbows and hands are now hurting everyday and I can’t do much at all without my knees swelling up.

How is everyone else getting on?

@macaronip1e did you bloods/xrays show anything to help with diagnosis? I’ve only had bloods so far and the results were pretty much normal.