It’s about 10% of PsA patients who are diagnosed with PsA but without a Psoriasis diagnosis. Sometimes their psoriasis has been so minor that they really didn’t think anything of it, or their psoriasis symptoms don’t fit the scaly-itchy-patches that we think of when someone says “psoriasis”. And then there are the folks who get the Arthritis first, and the dermatological “reveal” later. For those of patients without psoriasis, getting a diagnosis is usually a very long and painful process.
We have a new member – @koperr26 – who commented that they are “Just curious to meet others who have been diagnosed, but do not have skin problems.” Well we’ve got those people around here too! Click on the t@g to see koperr26’s profile.
Let’s say welcome to koperr26, so that she doesn’t think she’s the only one without psoriasis!
Hi Kamee! My mom and I both have nearly no psoriasis, but both of us have Psoriatic arthritis. I was diagnosed fourteen years ago, at age thirty five, but realistically had trouble starting in my early twenties.
I was diagnosed in the basis of what I know now was my first flare, plus a tiny spot of psoriasis on my knee. My mom was diagnosed in large part based on my diagnosis.
Welcome @koperr26 to a sight so good it makes those without PsA jealous of those who do! I am one of those who had a blow up of inverse psoriasis at about 50 years of age after never having any sort of skin issues before. It sort of fizzled out and has been managed with a topical med and now is 95% non-existent. My rheumatologist always asks, “How is the psoriasis”? and I give the same answer…”What psoriasis”? The official PsA showed up about 7 years after my psoriasis episode. The battle with fatigue, knee and foot pain is the far greater issue. I find the medical profession quite confusing as their methods of diagnosing seem to be all over the place. Last week my GP commented on how good that it was that my inflammation markers (blood work) are way down…they have never been way up as might be in RA! Anyway, sorry to babble, stick around and you will meet great people who understand and “get it” …uh, I mean, “get us”…we already have “it”…or we wouldn’t be here, unless jealous of those that do! Misery DOES love company! What’s wrong with that? Be well!
Koperr, I never told you about my non-psoriasis! It took ten long years between the time I got sick (except nobody thought I was sick) and the time I was diagnosed. I was stiff and sore and had painful feet. I was tired and depressed. Sooooo tired. My limbs hurt: I couldn’t raise my arms over my head in the shower. At night I would lie in bed, panting with pain: I was one big burning ache from the waist down. But my doc thought I was just OCD, fat, lazy and menopausal. Get told that enough and you start believing it yourself. I finally had to take early retirement from teaching because I just could not continue. I was diagnosed at 60 because of my joint damage.
After I was diagnosed, I recognized that I did, in fact, have psoriasis… I had really itchy skin that earned little more than a shrug from the doc. (Her exact words were “That’s why god made bath oil.”) And I had a bit of toenail “fungus” that defied treatment. Subsequently, the derm found a dime-size patch of Ps on one elbow which she declared Psoriasis. But I didn’t “have” psoriasis that anyone else – even I – would call by that name.
Then I remembered that years and years before I’d had a mystery skin problem: itching peeling raw patches … um … “where the sun don’t shine”. Steroid cream helped. Of course, that had been inverse psoriasis.
So yes, there are plenty of people who get diagnosed with PsA first. And they might never see Psoriasis. Or they will recall a minor eruption. Or the dermatologist asks and you realize “Oh, so THAT’S what “that” was.”
We like to think of ourselves as the “elite” of the PsA world. Kidding, of course. We’re glad you’re here, and hope you post really soon to say hello!
I was also atypical, with no psoriasis symptoms at the time of my diagnosis, although my mum had had extreme psoriasis in her later years. My diagnosis came after the rapid disintegration of my left knee, necessitating a knee replacement, followed by an abnormally long recovery. Even with my inflammation markers sky-high, my rheumatologist was clearly uncomfortable assigning PsA without any psoriasis. That was 7 years ago.
Last year, sadly, his worry proved needless: I developed pustular psoriasis on my palms! Like everything else with this disease, atypical is the norm.
Ouch, Susan2! That must be really awful to have on your palms. I know of another member who suffers that on her feet. Miserable stuff.
While we’re on the “atypical” theme (still? as usual?) another thing that throws doctors off is the fact that for about 51% of us, our inflammation markers look normal. In my case, one of my hips disintegrated so rapidly that the radiologist was sure that it was avascular necrosis.
Of course, my inflammation markers were normal (as they always had been). My PCP argued that it was NOT PsA because of the normal markers. I insisted that it WAS PsA, despite the normal inflammation markers. It didn’t really matter, because the hip had to be replaced whatever the reason. Anyway, during the surgery the inflammation in my hip was so bad that the whole area had vascularized, and when the surgeon went to install one of the main parts, I lost two litres of blood. Meanwhile, my markers were normal.
As Susan2 said, atypical is the norm. We PsA-ers are special.
Seenie, it certainly helps to have a sense a humour! When I realized what was happening on my palms - because even pustular psoriasis can present in several different ways, and change over time - I told my rheumie that, finally, he could be reassured of his diagnosis! As it happens, I have had one recurring pustule in one place on my instep, which my family doc had treated with ointments and antibiotics for several years.
I’m with you on the inflammation front, too. I have had periods of high inflammation with corresponding joint and muscle pain, but the same dismal symptoms have also occurred when my numbers were low. My rheumatologist is told me to watch for this, so I don’t ever have to convince him.
I’m still managing the hands with a new topical, and have not yet had to resort to biologics with the PsA. My pain levels are tolerable, and no new damage has presented. For a while there, it looked like the dermatologist was going to be the one prescribing them: rather ironic after all the travails with the 7 years of PsA. Oh, it’s special, alright!
There is an advantage to having the Dermatologist prescribe the bios (or a with it Rheumy) you either get them more often or in higher dosages when the P is also charted.
Kidding, of course. We’re glad you’re here, and hope you post really soon to say hello!