Swelling, or lack thereof

Hello all
Can anyone help me with identifying what the symptoms of PsA actually are? My diagnosis was Undifferentiated Inflammatory Arthritis which I have been told at my most recent appointment is likely PsA. I was diagnosed with this after synovitis was found in both wrists on an ultrasound.
I’ve been taking hydroxychloroquine for over a year with a 4 month break. I also took methotrexate for a about 5 months but although some things improved, my arms especially my elbows and then shoulders, then mainly my right shoulder became so painful that I once ended up at A and E begging for pain relief. I’ve lost full movement of my right arm.
Anyway, I don’t get swelling. I have had swollen right index and middle fingers which felt stiff and difficult to bend (like sausages that might pop!) but it’s been on and off and hasn’t happened for a while.
It all started with hideous pain in my sacroiliac joint on the right side, it spread to the other. Then my coccyx. That was about 3 years ago. Since then it has been in my wrists, neck (horrendous) the elbows (also horrendous), shoulders and more recently my groins which I have been told by physio is the hips. This started suddenly like the elbows and I find it painful even to lie on my left side with my legs drawn up in bed at night.
Early on I had very similar sort of pain starting in my right leg and settling in my feet so bad I got a steroid injection to deal with the pain.
I have an ongoing issue with a truly awful pain in front of my right ear which feels as if it might be inside my ear too. It drives me mad.
Consultants have told me I also have hypermobility. The pain I get seems to be in the joint but a lot on either side, up and down almost deep inside the muscle. I have this in my knees too.
I was taking Etoricoxab until recently but I think it was giving me headaches.
I don’t have psoriasis although I get odd dry patches which get very sore under my armpit sometimes and also on the side of my neck. My grandmother had horrendous did have psoriasis, quite badly. I pointed out that I had never been diagnosed with hypermobility or had any issues but she asked me to do various stretches which proved it and was also told that my children who are under the care of a consultant for connective tissue problems would have had to have inherited from somewhere.
I have no idea who to ask for help with pain, what to ask at appointments. I can hardly get my head around what is actually wrong with me.
I’m a normal weight, nearly 51, very active although becoming much less so because of all of this.
Any advice please. Thank you!

You poor thing, you are going through the wringer!

There is a lot there and I’m sure some others will chime in, but I’ll start with a few answers and a few more questions;

Sausage fingers (which of course is swelling in and around the finger joints) is literally one of the classic findings of PsA.

Many of us get very little visible swelling. I had a swollen knee in the first 6 weeks, and fingers that would go up and down so I couldn’t wear my wedding ring, but they didn’t look swollen. That’s pretty much it in 9 years. And when I’m in a flare around half my joints are affected.

The pain in your ear is probably inflammation in your jaw joint, however there are other things this could be, so the trick it’s to get the inflammatory arthritis under control first - if that doesn’t get rid of it, then it needs specific investigations.

This sounds like a description of the pain associated with enthesitis (inflammation where the tendon meets the bone), or inflammation of the tendon itself. These are both classically associated with spondylarthropies, of which PsA is one.

Odd dry patches? Have you been seen by a dermatologist? Most of my psoriasis does not look like psoriasis (have had for over 20 years and no GP ever recognised it), I only ever had two tiny patches on my knees and elbows for the 6 weeks my knee was swollen. Technically having a relative with it is enough, but many members who think they don’t have psoriasis and are seen by a Derm find out that the funny patch of dry is skin is psoriasis anyway.

It sounds like you need to complete consistent medication trials so you know what is not working and keep moving on to the next one until you find one that works.

None of the traditional DMARDs worked for me and I needed to get through trying them to move onto the biologics. I’m not that familiar with the UK system but we have quite a few members there, maybe @Poo_therapy will jump in with the best questions to ask at appointments to make good progress.

Welcome to this great place to land! With a bit of time, you’ll find many answers and unfortunately, likely more questions regarding this crazy disease. I found that there are many things addressed in the past as some on here have been around for some time so check out the various topics while waiting for some answers. It sounds like things are a bit out of control for you and in those times, I have been put on that wonderful but evil thing called prednisone. Perhaps your dr would give you a 7 day blast to get everything to calm down and then address problems as they return. I went through that course a few times and it made feel like a young super hero…but watch out, prednisone has its nasty side! I’m still trying to tame the beast and on a journey like so many others. I’m only speaking from experience not medical proficiency. But PsA can do all of the above things that you are describing…it reminds of being a little child and running down a steep hill madly just getting one foot in front of the other…it’s all too fast and too much at once. I have no visible signs of swelling yet my knees feel like they will explode if I try to sit on my haunches or squat and I’m sure someone beat my feet with a bat while I was sleeping.

Thank you for your reply Jen - reading about your knee it reminded me that about 10 years ago I developed Raynaud’s out of the blue and round about that time I used to get black bruised elbows for no apparent reason and: a huge puffy swollen knee. Only the right one and it only went on for about a week but it was very strange. Not particularly painful but just before my wedding! Was very worried at the time that it wouldn’t go down in time.

Hi Amos - yes Prednisolone is the only thing that has had any effect on my symptoms but not a long term solution and can cause other problems. I have taken 2 short courses and I felt on top of the world! Rocket fuelled. I was able to go running for the first time in months and even my breathing felt super sonic (never had problems with breathing!)
I do however have a problem with pain under my tongue, dry mouth and eyes and food and drink going down into my nose. I’m going to broach this and the ear thing at my appointment today but imagine I will be looked at as though I’m mad.

Since you’re going to be there, may as well ask about Sjogren’s

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Everything you described is normal for PsA. You need to find a rheumatologist who can guide you through this.
You can even have PsA without a high SED rate, and without having a high ANA level.
Mine runs in alternates; joints flare, then skin. Never both at the same time.
I was diagnosed 25 years ago, and also have RA. An immune problem. So if a rheumatologist doesn’t help you, perhaps an immunologist can. Good luck. I feel for you—mine started in my coccyx and I haven’t been able to sit normally for decades. But meds can help if it’s worth the risk.

Hello there and apologies for my delay in popping up. I was away on holiday for a week in the Lake District which was truly lovely.

All of which you’re describing is indicating at least an inflammatory arthritis. That sore skin under your arms might well be inverse psoariasis too. Do you also get sore skin under your boobs and groin area? That would also indicate inverse psoriasis. You don’t have to psoriasis to be diagnosed with PsA either, much of the diagnosis is one of exclusion really and a major indicator is a history of digit swelling, a history of things like tennis or golfer’s elbow or achilles tendon stuff too. And the fact that you reacted well to steroids is also a major indicator. A family history of psoriasis is useful too as in your grandmother’s history.

50% of us don’t show much inflammation in blood tests hence PsA being a called a seronegative inflammatory arthritis. Most PsA specialists here in the UK don’t rely on unltrasounds or MRI’s to show PsA issues either they instead rely on what’s called a PsARC exam to indicate the level of disease activity. That’s simply an experienced rheumy feeling all 68 joints currently deemed affected by PsA and noting it down on a chart. The NICE guidelines indicate this is is required. It’s amazing the swelling such an experienced rheumy can find by feel which doesn’t look much to the naked eye either. Hence ensuring that any rheumy treating you does a PsARC as it is the most effective way of measuring your disease activity and indeed disease progression. The rheumys simply relying on scans aren’t PsA specialists frankly and I would fire them and find a PsA specialist instead.

The NICE giudelines also indicate that if an inflammatory arthritis like PsA is suspected that you’re treated as aggressively as possible, starting with things like hydroxchloroquine, mxt, sulfasalazine or leflunomide on a strict 12 week trial of them often prescribing two together. If they don’t work or indeed stop working, NICE then permits the prescription of biologics if the patient has has two of the above type meds fail them plus they have three or more swollen joints (hence the importance of ensuring your rheumy does a PsARC always.

You’re rheumy should also be looking at the CASPER indicators plus PASI and various other methodologies to identify your type of infalmmatory arthritis.

Sadly within the NHS there are far more incompetent rheumys than there are competent ones, so you have to become an assertive patient and fairly ruthless too in your quest to get adequate care. Hypermobility issues seem common as does a diagnosis of fibromyalgia.

For pain relief it’s actually your GP who should be dealing with this, Etoricoxab is an excellent anti-inflammatory but always needs to be taken with a stomach protector like omeprazole. Your GP can also prescribe painkillers, the one that works for me is Tramadol.

With appropriate aggressive on the ball treatment by a PsA specialist rheumy, things can get an awful lot better. I’m now coming up to 6 years with PsA and thanks to meds I climbed a Wainwright last week which I would have never thought possible just ever. And I’m coming up to age 60.

So my med history went like this,

Mxt hated me so I was put on sulfasalazine which worked really well after about 5 months at 6 tablets a day. It continued working well for around 5 months. I thought I was the luckiest person ever since it’s such a benign drug to the rest of your system.

Then I was put on my first biologic (since two DMARDs had failed me and the PsARC exam showed I had at least 14 swollen joints which I couldn’t see) that worked patchily for 11 months. Basically I only got 12 consecutive weeks of relief. That was a biosimilar to etanercept.

Then I was given a biosimilar to Humira which hated me so I only lasted 8 weeks on that.

Then I was given Cosentyx and I’m nearly 2 years on that and it’s working marvelously!

Hydroxchloroquine can really really mess up your eyes as indeed can PsA. So if you do nothing else next week, please get in and see an optician under an emergency appt. Both your GP and your rheumy should have explained how quickly you need to see someone about your eyes if they have issues.

Hope all this helps. Remember PsA is a systemic disease, it doesn’t just affect joints and tendons, it can also affect most of internal organs plus eyes, jaws, ears etc hence the edict by NICE to treat as aggressively as possible.