I’m a newbie to the forum and to PsA in general and am hoping that those of you who are farther along your PsA journy might be able to lend some insight.
In short, I recived a PsA diagnosis from a reputable rheumatologist at the start of 2018, but he didn’t seem completely convinced (due to a lack of clear joint involvement and raised inflammatory markers in the lab results). And I’m wondering if anyone else had mild / non-specific symptoms for awhile before getting a solid diagnosis and, if so, what new development(s) finally pushed you over from “we know something is wrong” to “it’s definitely psoriatic arthritis”?
By way of background, I’m a mid-30s woman who has always been active and healthy. But about a year ago I developed ches pain that was eventually determined to be costochondritis. This was followed by fleeting / sporadic pain around my knees, left elbow, and one index finger. It was an annoying thing that would come without warning, last for an hour or so, and then vanish for days or weeks. By late summer I’d started shedding hair quite heavily and after seeing a dermatologist for a stubbornly itchy scalp, was given a diagnosis of psoriasis.
Since autumn I have had heel pain (which gradually went away), trochanter bursitis, lower back pain that my PCP suspects is from the SI joints, as well as de quervain’s tendonitis and other likely tendon-related pain in both index and pinkie fingers. The costochondritis still comes and goes at its own whim, and I’ve had some minor nail lifting. Also throw blepharitis (eyelid imflamation) into the mix.
But I’ve never really had any true swelling, and everything seems to just around various joints, never the joints themselves. And it’s always been frustratingly inconsistent — the kind of thing that will hit me for several days (pain, nausea, fatigue, appetite loss) and then retreat or even almost completely disappear for a week or two. Prescription NSAIDs do seem to help somewhat but more for smaller things like hands and feet and less for hips. Personally, I’m not sure how much is truly their anti-imflamatory action and how much is just the placebo effect.
At what point can you know for sure that PsA is the correct diagnosis, especially vs. centralized pain issues such as fibromyalgia?
I think I’ve had PsA for most of my life and that for me it tends to be episodic in nature. I was 56 when I was diagnosed after an almighty flare. My current rheumy thinks the very swollen knee I had at 16 years of age, followed by joint pain and periods of fatigue throughout my life, suggest that I may have had PsA at ‘background level’ for all that time.
I wish I could say otherwise, but in my case only a really horrible flare-up in my '50s resulted in a firm diagnosis. ‘Frustratingly inconsistent’ is so often the nature of PsA. However, I pretended I was okay for years when I really wasn’t. In that respect, you’re already ahead of the game because you are so clear about the issues you’re experiencing. Actually in many ways you’re ahead of the game and it does sound to me, unfortunately, as if you may have PsA and while I’m just some bod on a forum, your rheumy clearly thinks so too albeit with slight reservations.
The fact that you have current psoriasis is significant. Psoriasis is not a symptom of fibromyalgia, as I’m sure you know. But it is so strongly associated with PsA. And I too find that joint pain, fatigue, nausea etc. can be very short-lived although I have also experienced such things virtually non-stop for years - madness! Step one: take on board that the total lack of any pattern is par for the course. Good luck with that but you sound so very sensible I’m sure you’ll get there. Step two: keep pressing for careful monitoring of your symptoms because if you do have PsA, more aggressive treatment sooner rather than later may well slow it in its tracks.
There has to be a sweet spot (sic) between slightly ambiguous symptoms and full-on ones at which a good rheumy will go for a firm diagnosis and more proactive treatment. And it does sound as if you are a very wised-up patient, which helps. Much as we might say here that many folks do not have raised inflammatory markers, in my experience they do help with diagnosis. And there’s also a big emphasis on swollen joints. But you have a lot of other seemingly very relevant stuff going on so don’t let anyone forget that.
The situation you describe really brings home to me how frustrating this disease is, as is the approach to it. It so often seems to ‘brew’ for a long time before folks are diagnosed and that can’t be right. But I suspect you are doing okay-ish in terms of heading towards more clarity and getting prompt treatment that will make a huge difference to outcomes, if necessary.
Thanks much for your thoughts. I’ve read through some of the older threads on the forum, and there does seem to be an annoyingly common theme of people realizing (at the time of diagnosis) that their symptoms have actually been gradually building for years — or making brief (unwelcome) appearances over the decades. It’s doubly unhelpful that tendon issues like tennis elbow or Achilles tendonitis are relatively common in isolation as simple overuse injuries and that after a certain point in life everyone seems to have at least a little osteoarthritis.
And it doesn’t help that women, more than men, tend to be dismissed as over-emotional, having menstrual-related issues, or just being stresse / depressed. The first rheumatologist I saw last summer ordered a heap of blood tests but didn’t do a physical exam, and when the lab results were negative he basically said to exercise because it will release endorphins. So, completely embarrassed, I slunk back to my GP with my tail between my legs and waited another half year until I got up the courage to try again with a better, more open-minded rheumatologist.
I have a follow-up appointment with him next month but after that will be moving far away overseas. So call me completely insane, but I’d love to flare badly enough in the next few weeks for him to be able to confirm his diagnosis (and put it in writing of course) so that I can bring that paper with me to the new town… just in case I end up with another doctor like the first "you must just be a stressed woman” one.
I had lots and lots of tendinitis from my teens on. Exactly one spot of psoriasis on my knee (that’s it). Ultimately, when my second child was about 9 months old, I had one finger then another swell up. I was lucky, in that it got me diagnosed fast. I had progression and continue to do so on meds, although significantly slower now.
The point? Sometimes it’s luck of the draw in terms of how one gets diagnosed. Oh, and I was super lucky because I was definitively diagnosed even though I’m seronegative. With psoriasis, it certainly should lead one in the direction of psoriatic arthritis. You’re also having some funky stuff with the tendonitis, costochondritis, etc, that is associated with inflammatory arthritis.
Ditto what Stoney and Sybil said. Also bear in mind that I’d never even heard of blepharitis before this forum - it is an inflammatory condition (unless you never bathe!) and certainly strongly associated with inflammatory arthritis, with many members here having experienced it.
I can understand your feeling that you’d like to just have a proper flare (with definitive symptoms) so you can get the diagnosis confirmed and treatment properly moving.
Though I wouldn’t wish a proper flare on anyone, I had very similar symptoms to you, and went to my GP, but didn’t make it past him, so just ignored it for a couple of years. Then the huge flare came, and it was like being hit by a truck (couldn’t walk more than around 500m without a rest, for example).
Ironically, the only joint that looked swollen and hot, had gone down in the 3 month waiting period for the Rheumy. So despite me knowing I had swelling (couldn’t get rings on my fingers, bra straps and socks would leave huge indents that would last for hours), and the pain being directly in the joints, he was not at all convinced. To his credit though, he at least checked the tender points properly for fibromyalgia, and when they didn’t come up, concluded I had very mild PsA.
The message in all of this is that obvious symptoms to one Rheumy, are considered uncertain by others. It sounds like you have a pretty good one, and are a proactive patient. Keep persisting and even if you never get hit by a big flare, all the little pieces will add up.
Hi amy, my experiences have been similar to yours, Sybils, Stoneys and Jens … lots going on in the background for a long time until something became unbearable and demanded immediate attention!
My first rheumy sounds so like yours I almost wonder if he is one and the same person … certainly wouldn’t describe them as “hands on” would you? I remember that first appointment when he’d already pronounced that he didn’t know what was wrong with me, only after that statement did he ask whether anyone in my family had psoriasis. No one to my knowledge BUT, I said, I’ve had lifelong skin issues … he asked if I had any now … so I whipped up my trouser legs (cringing that my legs were unshaven) and presented two perfect textbook psoriasis plaques over both knees. The look on his face was priceless “that’s plaque psoriasis, I know EXACTLY what’s wrong with you, you have psoriatic arthritis”.
So I left that appointment with my first diagnosis of psoriasis - in spite of having seen many dermatologists over the many years since childhood -AND psoriatic arthritis. And to this day I very rarely have anything which is a textbook example of either.
I find keeping a note of things which occur, even if only transient, as well as a quick photo if there is anything to see is always helpful … so that really is my only additional advice to you … keep photos to show your docs.
Glad you found this group, the friends I’ve made here have helped keep me sane
Hi Amy, I too searched for a long time for the definite diagnosis. I kept waiting for that one thing that would show me and the docs that I, 100% had psoriatic arthritis. My rheumy 7 years ago started believing I had PsA based on clinical exam and history. I had no diagnosis of psoriasis, no blood markers except a consistently abnormal ANA, and no significant swelling. What I did have was 3 years history of multiple sites of pain around the joint, tenderness beneath the skin (which I now know to be tissue inflamation and enthesitis but back then I used to describe it as deep bruising under the skin). I also had fatigue, back ache, foot, elbow, shoulder and neck tenderness and pain, rynard’s, dry eye and occassional mild dactylitis (but never on medical appointment day sigh). Oh and I forgot muscle weakness.
Dismissed as middle age/change of life by my GP although I was about 42 at the time haha. This rheumy was the best…he thought it was PsA but systematically ruled out everything else in order to be confident. That was a long process…
Funny thing is I never got the definitive diagnosis. He increasingly thought it more likely but maintained a healthy skepticism. After a few very rough years of failed meds that made me sick and filled me wth painful self doubt, waiting for a definite diagnosis, I was started on humira 9 months ago. Even when they put me on humira I still did not have a definitive diagnosis.
It was the first three months of humira that I finally realised the best wisdom in how to name my condition came from these pages…was it @Jules_G or @Sybil or @Seenie who said ‘if it walks like a duck, … it’s probably a duck’. The humira helped with everthing but not completely on the enthesitis. It was amazing on the fatigue! A very large and strange skin thing on my ear cleared up gradually with the humira too and they are now saying it was probably a weird kind of psoriasis.
So in short the way the humira worked and didn’t comletely work (on the enthesitis) and even the fact that enthesitis is my main problem, tend to collectively point toward that I have an atypical duck. It has all the main features of a duck but is a bit of an outsider duck. So for now I accept I have a duck…as that is the best fit. If a doctor walks into town tomorrow and 100% can demonstrate my duck is actually an emu then I might change my mind. However the evidence would have to be very strong cause ducks and emus might both be birds but look and behave very different.
Anyway I think you get the gist…I hope you find the answer soon that’s helpful for you .
OMG…I think I got carried away with my post…I won’t mind at all if you need to rest after reading it…a real fatigue tester I’d say!
Hi MacMac, it sounds like your rheumy is a keeper. I like that mix of persistence and commitment temperd with healthy skepticism and re-evaluation of the working hypothesis. I’m assuming that even though he was uncertain for years what exactly was causing your problems, he assessed that it was likely an immune-related inflammatory issue… or else he would have suggested a different specialist?
As a side note, I spent this morning at the museum indulging my (slightly odd) fascination with taxidermy but sadly didn’t see a fully feathered duck or emu — though they were both upstairs in the skeletons exhibit. And who would have thought that dodos were related to pigeons?
Jules, thanks for the reminder about taking photos. I should really make time to take some baseline ones since my fingers are pretty thin, so with swelling they’d probably just look “average.” I just wish I could find a good one of my hands from a few years back… I feel like one of my fingers is beginning to bend sideways in a way that it never did before but I can’t be completely sure because I don’t have a good “before” shot. Maybe it was always like that and I just never noticed?
And I suppose that, in the name of fairness, I should cut that first rheumatologist some slack since my GP’s referral was to test for Sjogrens, not joint issues. The dry eyes proved to be a red herring. Still, he lacked imagination and had the personality of a dead fish.
I’ve never had pretty hands but even I could see they were getting bigger, although not in a classic sausage finger way. At some point quite early on I had to stop wearing my wedding ring but I could see the docs thinking “she’s just put on weight” … which I had … but!!! Ultimately, now, I think my wedding ring is at least four sizes bigger than it started out … it’s been costly, that’s for sure.
Anyway, one day I was looking at my mothers engagement ring which I wore, very comfortably, on my right ring finger at my wedding in 2007 (five years prior to diagnosis). I took it, and a wedding photo, to one of my appointments and popped it down my finger until it stopped and presented my hand to the rheumy (on the old team!) so she could feel it was bone - an enlarged PIP joint - stopping it going on.
This same finger is drifting left at the MCP - which I’m sure my current rheumy says is caused by the tendons.
So I definitely think that photos and examples like this can be helpful to the medics, especially when we present with symptoms that are not textbook hot, red, swollen joints but nevertheless we know they are not “normal for us”.
I’ve found that rheumys vary greatly - one was great and diagnosed me from my reported symptoms, observation of my joints and family history of PsA, even though bloods and scans were fine. Another, however, dismissed my on going pain, only looked at my bloods and then diagnosed “fibromyalgia -like” symptoms and suggested Gabapentin. As a health professional myself, I knew this wasn’t right and refused the meds. Since then, I’ve been seeing the specialist nurse instead, who’s got the bit between her teeth, tried me on different meds and is already talking about biologics if these don’t work. She can prescribe these, so I don’t need to see the rheumy, yay! I find specialist nurses much better than consultants, if you’re in the UK I would highly recommend this. They just seem more interested in getting the treatment right.
I would love to agree with you a.laker. And in fact I have met some great specialist nurses who do really good physical examinations and are very knowledgeable about PsA and the meds. However the worst PsA practitioner I’ve met was a specialist nurse (and she was up against some stiff competition). Did you know, for example, that PsA never affects the spine? And that it doesn’t cause pain? And if you are having joint pain or rib pain then it is possibly down to the meds and you might as well just stop the Mtx or Humira etc. just to see if that helps?
In a way that particular nurse did help with my mobility because I fair sprinted out of the hospital and never went back.
As with just about everything else PsA related, trial and error seems to apply to rheumys and nurses alike. Thank heavens for the wonderful ones, of whom there are many. If they but knew how much we appreciate them!
I’ve only come across one decent specialist nurse. It’s a male one too. Can’t really get along with the others, I’ve discovered. They never demonstrated much coherency to me at any rate. The ones I encountered initially were horrendous frankly.
Talked to one where I’m being treated just recently and she wanted to me try a third DMARD. I said but NICE only expects me to try two and the third one has been already contraindicated in my notes. ‘Oh has it?’ she said. I sighed and got the steroid shot in the bum instead, which is doing fine for now. But I wasn’t that impressed.
For me I think the tipping point (for my GP at least) was the positive response my joints had to prednisone (given for a lung issue)… this seems to have confirmed an “inflammatory arthritis” diagnosis, most likely PsA. Lack of the appropriate bone erosions seems to have everyone a little reluctant to give a definitive PsA diagnosis (after 2 years of consistent low level pain/stiffness in ankles and other issues in a large number of joints).
Despite a lack of definitive diagnosis we are still forging ahead with medication… to date only minor improvements from Mtx, Leflunomide and Tilcotil, but perhaps these are all helping to keep damage at bay. It would seem an “inflammatory arthritis” diagnosis, although broad, is enough to allow for trials of various medications. To be honest, I’m not soo worried about exactly what to call it, more interested in getting some effective treatment and relief
Yes, that certainly points to the importance of finding not just a good doctor but one who also has a good team working alongside him/her. I always hated going to the dentist until I found one with a great hygienist and a super nice receptionist. Makes such a difference.
But I’ve seen a rheumatologist privately in the UK, and it’s kind of an odd setup —He has a secretary, but there isn’t a nurse or physicians assistant ¶ that works with him for private patients. Have been waiting for months for a referral to get back to see him through the NHS. I suppose the consultant is essential for diagnosis and such, but I’d really like to also have access to a nurse / PA for basic questions…
My specialist nurse has an advice line too, in which you can leave messages about meds or symptoms and they get back to you within a few days. Such a shame you’re having to wait so long to see a consultant on the NHS, but hopefully once you do you’ll have access to this kind of service. My consultant and nurse tend to share our their appointments, so I would see one of them every 6 months when more settled, but the nurse is seeing me about every 8 weeks at the moment while we’re trying to get my meds right.
Whereabouts in the UK are you? Might be worth consulting Mr Google to see what rheumatologist services nearby hospitals provide and if this includes specialist nurses.
However, as others have said, it’s still no guarantee of quality of treatment, it’s very variable
Funny, they seriously don’t let nurses do anything here in Aus without a doctor. I really think changing that would help access to people in rural areas, for example, or people who can’t pay the co-pay in small towns where free doctors visits are rare.
I don’t honestly think it would change quality because I think the variability is individual, rather than down to whether it is a doctor or a nurse. Definitely something we could learn from.
It just seems like the NHS system is so stretched that the official guidelines for inflammatory arthritis / rheumatology referrals might as well not exist. The scientific research certainly says that early detection and treatment is essential for better long-term outcomes, but the GP I saw said that she expected that a referral would take at least 4-6 months (this is in London). That was, of course, after I waited 6 weeks for a GP appointment.
It’s frustrating when there’s so much available capacity in private sector (really easy to get a timely appointment if you pay for it) but crazy long waits within NHS.
