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.

So I’ve got an appointment with a rheumatologist tomorrow! Any advice on what to say/ask? Thanks

@Iamme21 - make a list of symptoms you want to tell the Rheumy about and put any pics you want to show them of historic swelling/psoriasis/nails etc. in a folder on your phone so you can find them easily.

What you will want to ask will vary depending on whether you get a diagnosis or not, or whether this is a post diagnosis appt to discuss treatment?

In general terms I would ask about things you can do to help yourself e.g. keeping nails short, use of heat packs etc.

If you get a diagnosis then ask about treatment options and any questions specific to you.

So I saw Rheumy last month after my diagnosis and asked about whether the DMARD in question (sulfasalazine) would make me more vulnerable to Covid-19, whether it would affect me being vaccinated, any interactions with my existing meds and also about pregnancy as DH and I are hoping to have DC in the not too distant future.

So after my diagnosis in March I finally saw my Rheumy again 4 weeks ago (having last seen her in November). We agreed that I would start taking sulfasalazine providing my pre bloods were ok. Rheumy said that the hospital would deliver the meds to my house.

I don't have them yet and chased a week ago. So the good news is that my bloods were clear so I am approved to take sulfasalazine but I was warned it would take several weeks before I got the meds. I did rather hope when I saw Rheumy in early June that I would start meds in June but oh well.

In good news I had my first vaccine in May and my second last week so at least I am now fully vaccinated which makes me feel better before I take a drug to suppress my immune system.

I'm looking forward to starting sulfasalazine and hopefully that I will start feeling better on them although Rheumy did warn me that they may take up to 3 months to start taking an effect.

@IWishTheBishopWell Thanks that’s all really useful. This is my first appointment so not sure if I will come out of it with a diagnosis or not. I’m 51 with a history of psoriasis since the age of 3. I’m guessing they will talk through my history, symptoms etc.

I’m also double jabbed and menopausal so no worries there!

@iamme21 - I've seen a lot of Rheumatologists over the years for various issues. They will usually take your weight, blood pressure and a urine sample whilst you wait.

When you're in there they will ask for a background of your symptoms, when they started, where they are etc. They will probably ask you to describe your pain and to describe how long pain, stiffness and swelling lasts, particularly any symptoms on waking, such as stiff hands.

They should then give you a physical examination. I had to strip to my underwear for my last one - never had to do that before so I suspect that it was largely to search for psoriasis as I have nail changes with minimal skin involvement. Rheumy also searched my scalp for psoriasis. I would wear clothes which are comfy and easy to remove. PsA can affect a lot of joints - 68 I believe - so expect to be prodded and poked quite a bit.

Some people get a diagnosis straight away, especially if they have clear and visible swelling and psoriasis.

Whether diagnosed at the first appointment or not, expect to be sent for bloods, x-rays and ultrasounds to aid a diagnosis or to confirm a diagnosis.

I was told psoriatic arthritis was possible but not as likely as my issues being caused by my EDS. Bloods normal, xrays normal, then my ultrasound picked up inflammation in my fingers and I got my diagnosis. I saw Rheumy in November and had the ultrasounds in March (Covid delay) and was diagnosed shortly afterwards. Hopefully it will be quicker for you!

@IWishTheBishopWell That’s really useful info, thanks - I will definitely make sure I’m wearing decent underwear!
Are stiff hands in the morning really significant? I wake up and am in so much pain in my hands and wrists. I’ve not got a lot of active psoriasis plaques, but have got a couple and my ears and scalp are bad. I have also got nail changes on my toes, but only some ridges on my fingers.
I am a bit nervous to be honest, don’t want to feel like I’m wasting anyone’s time.

You're not wasting anyone's time, my Rheumy told me they always want to see anyone with psoriasis and arthritis symptoms to rule out PsA. Previous Rheumy's have told me similar.

Pain, stiffness and swelling on waking are arthritis symptoms. With osteoarthritis it will ease sooner, with inflammatory arthritis it takes longer - I was reporting stiffness and reduced movement for 45 mins - an hour on waking and Rheumy said that was an indicator of inflammatory arthritis.

Nail psoriasis is also another indicator of PsA - I think something like 80% of people with nail psoriasis have PsA or 80% of people with PsA have nail psoriasis.

I have only ever had 1 psoriasis plaque. Not medically confirmed but DH has plaque psoriasis and what I had looked like his. Until recently when I got what I think is inverse psoriasis the only psoriasis I have is nail psoriasis which is reasonably mild - detachment of toe nails, slight detachment in finger nails and a couple of shallow pits. You'd have to look very close to notice it. People can have really severe P and never develop PsA and some will gave very mild P or none at all and do develop PsA.

Tell Rheumy about skin and nail p and anything funny in your joints, especially pain, swelling and stiffness. PsA can commonly cause a whole digit to swell like a sausage and also tendon pain - Achilles is a common area, as is the elbows. So mention anything like that too.

The Rheumy will want to see you so don't feel you're wasting time

So apparently I have no inflammation!

Is that based on the Rheumy's physical examination of you @iamme21?

Are they doing ultrasounds?

They didn't find any inflammation when I was physically examined but the ultrasounds of my hands revealed it.

I went to a Rheumy with suspected inflammatory arthritis 4 or 5 times from 21 to 28 and no inflammation was ever found. The ultrasound I had at 32 was the first to find inflammation. My symptoms were pretty similar in my hands from 23 - 32, I would wake up with stiff hands and sometimes a little swelling.

Unfortunately it can take a while to get a diagnosis

@IWishTheBishopWell I had an ultrasound of my hands and feet, apparently no sign of inflammation. That have also done more bloods and X-rays, so need to wait for the results of those. Doctor mentioned fibromyalgia?

I thought you'd say Fibro - I was diagnosed with Fibro at first too. Sometimes inflammation can take a while to show up as it did for me.

For the future, remember you can always go back to Rheumatology if you have symptoms of inflammatory arthritis and psoriasis. My Rheumy says they always want to see people with psoriasis and joint pains, issues or swelling. So don't be afraid to push again if your symptoms don't improve or flare up again/get worse.

That’s really good advice, thanks for all your help

Hi, I'm currently being investigated for possible psoriatic arthritis but not sure my symptoms exactly fit.

History of psoriasis since childhood (mostly on knees, scalp, ears) been stable since last two years when it's spread to elbows, face, eyelid, hips and ankles. Also big increase in nail pitting/ridges.

My wrist started to hurt a few months ago - thought I'd maybe injured it. Then few days later knuckle joint on same hand became very tender to move and touch . But no visible swelling. My legs feel stiff and sore first thing in the morning but better after an hour or so.

I've since had dull aching/burning in several joints including ends of fingers, elbows, knee, big toe joints. But again no visible swelling/redness.

The reason I'm not sure if it fits is lack of swelling and the type of pain. The dull aching isn't constant, in fact a lot of the time the pain comes and goes lasting a few minutes in each joint, and feels more stabbing. I also have occasional shooting muscle type pain down my arms and legs.

I'm just wondering if anyone else's pain/symptoms have been along the same lines as mine. The gp mentioned psoriatic arthritis but also maybe fibromyalgia. I have been referred to Rheumatology and luckily I have private insurance through work so can get a fast appointment

Hello all, just been reading this thread as have come from specialist today with psoriatic arthritis diagnosis and two knees freshly injected with hyaluronic acid.

Doc offered drugs if/when I need but waiting till December to see how I feel as currently not too bad.

He did also suggest that some of his patients find limiting gluten and or lactose does help. Was wondering if anyone here has tried that and how it worked out?

This is a fantastic thread. Just wondering how you are all getting on now?
Im at the very beginning stage of asking the GP for a rheumatologist appointment so am reading up on it and this thread is very informative.

I'm getting on pretty well.

I started sulfasalazine in July but tested positive for Covid 8 days in and had to come off it. I started it again in October and upped to the max dose earlier this year. Since upping the dose I have largely been better. Less stiffness and less joint pain.

I struggled a bit with nausea on 4 tablets a day but that settled down when I increased to 6 a day. It also reduced my appetite and facilitated some weight loss which was very welcome.

Hope everyone else is doing ok too.

Off shortly for my 5th covid jab (3 primaries and this will be booster number 2).

Anyone else had the full set of jabs?

I saw a rheumatologist after an 18 month wait who sent me a letter saying "psoriatic arthritis?". No treatment offered apart from Naproxen and a telephone appointment with a physio. Not sure what to do now - is that it? Do I get to ask for a second opinion?

@ColourHex your symptoms are very similar to mine

I was diagnosed in December; started on methotrexate but couldn't tolerate the side effects, I gave it five months but felt like a zombie even at a fairly low dose. Then tried leflunomide, but got a nasty rash almost immediately 🙄 Now approved for biologics, but have to wait until October/November to start them😭 Saw the consultant on Thursday and he's given me sulfasalazine to try while I wait, and a steroid jab to tide me over. Steroid jab has worked brilliantly before, but hasn't really done much this time. Does anyone know how long they usually take to work? I can't remember how long it took last time, so I'm not sure if I'm just being impatient! My ankles and feet are so inflamed and sore, I've had to get a mobility scooter just so I can do the school run. All feels rather overwhelming right now, so it's fab to find this thread. Unmumsnetty hugs to all xx

I'm doing really well.

I've had pain from tendinosis around my hip and a tear in my supraspinatus, plus a bit of a niggle in my Achilles, but I really do feel a completely different person since starting Cosentyx (I take one fortnightly instead of two at once, as whilst I'd feel even better after two at once, I'd feel worse for the last fortnight, compared to feeling both OK and a little tired and sore towards the 10 day mark). Haven't had a steroid pulse since last January either - I just haven't needed one.

Been going to the gym regularly, lost loads of weight, absolutely love having custom orthotics, even though I'm wearing running shoes a good 2-2.5 sizes larger than my actual foot size to allow for orthotic and the extra width of my toes needing to spread out when weightbearing.

The Psoriasis is down to some itching at the back of my neck (it had got so bad a few years ago, I made DP give me an undercut) and using emollient religiously to make sure my legs aren't so sparkly / to protect against further flexural episodes. My hair is much healthier and thicker, too - it's long enough time now that all of it is hair that's grown since stopping MTX/Humira and starting on Cosentyx - I use a tiny bit of Elvive Magic Water on it every wash, but that's more for strength, not sheer amount of hair.

I've also become a fan of using a massage gun - it really seems to help ease the trigger points and sore entheses, especially around my SI joint where the majority of grumpy tendons lurk. And the little pings, tings and occasional pops and clunks around there are so nice; for me, that means the swelling's gone and the joints have space to move.

I went gluten free (already lactose free since MTX made me puke up on the mere thought of dairy) with the support of my Rheumatologist and that's massively improved how I feel as well. It's a bit annoying when I can't eat any old thing, but on the other hand, it means I'm not tempted by random stuff, so am eating far better.

In all, whereas last year, I said I'd have to be persuaded to give up Cosentyx, this year, I'd say, combined with GF/LF, the orthotics, exercise, eating better and the non medicinal things to address pain, there is nothing that will stop me taking it other than an outright refusal to prescribe.

It varies - for me, it was usually either the same day or two days at most. However, if you've been struggling and walking unevenly for months or years, you could have issues with your gait that's making your pain worse.

If you can afford it, I'd say see a private Podiatrist/biomechanical podiatry for custom orthotics, as you can by all means request a referral to the hospital one, but the wait can be months and then it's months before you actually get a set. And if that's too expensive, I'd suggest a trip to a running shop that offers gait analysis, as they'll be able to see if your foot is rolling in and suggest the types of shoes that will fit you best (and then add some arch support orthotics - custom are obviously best, but the £20 ones on Amazon that also have a metatarsal pad can help, as can doing seated wiggles and rolling over a ball or frozen bottle of water as though you have plantar fasciitis). If you do have muscle weakness affecting your gait, that causes stresses all the way up, so standing/walking unevenly then causes shin pain, knee pain, hip pain, lower back pain, thoracic pain, neck pain, headaches...

Whilst people are sometimes very quick to say it's ridiculous even suggesting it, exercise can really help - when I went back to the gym, I immediately started doing lots of work to strengthen my leg and core muscles - hip adduction / abduction, leg curls / extensions, leg press, rowing. The advantage of machines is that you're seated and you're put into a safe position to teach you how everything should be working even before you add any weight. Swimming is also brilliant and feels sooo good. PureGym have accessible premises, even when on upper floors - we have a lift and several wheelchair users come regularly, for example. I've not personally seen anybody using a scooter, but I don't see why they wouldn't, especially if you can still do short distances. Because there's a risk that the pain leads to not being as active, which leads of loss of muscle strength, which leads to less activity because it causes more pain and so on.

(On a side note, even the type of pain from exercise is better for me - the ache of a worked muscle the next day is a good pain that interferes with the other type. And being able to just concentrate upon what you're doing/listening to on earphones in an airconditioned, clean environment is a great way of not thinking about the bad and painful stuff for a while).

Yes, I am an exercise evangelist. But that's because the way it can make your body and mind feel good can't be bought in a pharmacy. It doesn't necessarily fix everything, but it can reduce unintended further harms from inactivity and after so long of not having anything else to think about than how much I hurt and couldn't do anything, it's a blessed relief I wish everybody could feel.