I’m pretty sure that I have Psoriasis although it hasn’t been officially diagnosed.
Following my recent joint issues I have spent some time researching and also piecing together my own medical history.
This is partly to try and determine whether or not it’s likely to be PsA or RA.
As far back as I can remember I have had skin complaints or one type or another
As a child every so often I would have rashes that would eventually clear up- I was never given a diagnosis that I recall . Just put some cream on it or something along those line lol.
Then in my twenties I had a few outbreaks of a rash that would cover my upper body.
I remember feeling generally ill at the same time and have now concluded looking at pictures that it was guttate psoriasis.
I have also had a few episodes of Pitoriasis Rosea , although I’m not sure that is actually directly connected to Psoriasis
More recently over the last 8-10 years of so I have had occasional bouts of what I’m fairly certain is plaque psoriasis on my upper arms and elbows.
I don’t know why I didn’t pursue this more and get a diagnosis earlier.
I suppose it’s partly because it was fairly mild and intermittent. Years could go by in between episodes.
Anyway . I would assume that you would need to have an active case of psoriasis to get a diagnosis and I don’t have anything right now.
How important is this as part of the overall PsA diagnostic process?
So ‘current psoriasis’ is so significant that it scores 2 points towards the 3 or more that can clinch diagnosis, whereas all the others, including a history of psoriasis, score 1.
I managed to completely forget that I’d had psoriasis for years by the time of my first rheumy appointment, like you it hadn’t bothered me that much plus the diagnosis of it had wavered.
It’s definitely worth telling the rheumatologist about your history. Might there be a record in your medical notes, possibly including a diagnosis or tentative diagnosis?
Any medical visits I had regarding the various rashes were a long time ago and I’ve visited many GPs since then.
I am in the process of putting together a comprehensive medical history for myself.
It helps to paint a picture when it’s all recorded .
A number of seemingly unrelated issues that could all have a common theme.
I live near Toronto where they have a well regarded PsA clinic.
I haven’t been diagnosed with anything yet but if I do get a referral to a Rheum then it would be preferable to be referred there as opposed to one that doesn’t specialize in PsA.
I’m going to call the clinic and see if I can get an idea of their referral criteria.
Sounds like a plan! I just took a look at your other posts, obviously it’s only from another patient’s perspective but the issues you mention look like they have a PsA-type common theme to me.
I suppose in your shoes I’d just take that little lot to the best rheumy I could find and let them join the dots. But if being super-prepared works for you I can understand that too.
Do you experience any of the ‘vaguer’ stuff such as fatigue or malaise i.e. feeling absolutely lousy? (I only wish it was vague!). And have you had a good old look at your nails? Psoriatic nails don’t necessarily look too bad and sometimes people overlook them thinking they have a bit of fungal disease.
I don’t have any malaise or issues with my nails right now.
I’m just experiencing joint issues primarily with my hands, knee and SI.
I like to be as prepared and informed as possible regarding health issues.
I’m a researcher by nature.
Also , my experiences with GPs here haven’t been great and I want to make sure that the appropriate tests are done and I preferably get a referral to a Rheum.
The more information I have the better in this regard.
Skin issues are very common with any autoimmune disorder, psoriasis, however, is one of the more uncommon and needs to be diagnosed (its actually a pretty straight forward process) As you might guess PSORIATIC Arthritis is pretty specific and worth noting, has less to to do with joints than most other forms as it is a systemic disease that effects many areas and may never get into the joints. Sadly as it chunks away at those other areas it can turn on you very quickly and do unbelievable amounts of damage in almost no time.
As @ktel noted the bouts of skin eruption come and go (an may not be psoriasis at the time but something else) The GOOD thing about all of this is psoriasis is a genetic disease so if it has occured in any 1st degree relatives, you are golden.
That was what nailed my mom’s diagnosis of psoriatic arthritis. She had no psoriasis, maybe? But I have psoriatic arthritis, so very easy to diagnose once she pointed it out.
So here is my story in brief Sometimes your heart goes kaflooey and they tell you you have months to live when your ejection ratio drops to 40% and along comes a smart dermo because you figure what the hey, no reason to be miserable from the P while waiting for the heart to quit. The smart dermo whounderstands P is more a symptom than a disease sends you immediately to an even smarter rheumy who confirms a PsA diagnoses and sends you out the door at your first appointment with Enbrel and Voila, your heart gets better, and you realize the nagging back ache (that robbed your career) that you have had since falling out of an air plane also gets better. Of course other things get worse and your joints to start to bug because enbrel is not terribly effective against peripheral symptoms (so they add MTX) you but had the treatment not started, you wouldn’t be around to notice. At least that was my experience…
Blimey. That’s thought provoking. It’s another of those statements I’m never going to forget while wondering why on earth the medics I meet don’t dig that deep.
Haha yes, that! I had back therapy several times over about a 25 year period, for no real injury. I was told after the first therapy, which was in my 30s, I needed to use good posture and my back would never get sore again. Hmmmm, sure. Well, it didn’t get sore again for another 12 years or so, at least not sore enough to have p.t. during that time, but off and on I’d get the “pinched nerve” that lasted several weeks and then fizzled out. I can’t even remember when my lower back finally started feeling stiff and achy all the time and I was unable to stand still or walk for very long periods…not yet connecting the dots and realizing it was probably the start of PsA.
That’s also VERY interesting tntlamb,
Yes!
Wow! I always thought it seemed like my psoriasis came from within my body and not just a skin disease. I told that to a heart doctor (I had some peculiar heart beats and needed some tests somewhere around my late 40s) and he basically told me I was an idiot and scientists had researched psoriasis a lot more than I had and they knew what psoriasis was and wasn’t. Turned out my theory wasn’t so stupid when news came out of psoriasis being an autoimmune disease…I totally agree it’s a symptom of a disease–probably a symptom of psoriatic arthritis!!!
I am automatically included in some sort of study with my current rheumy, all the patients at that rheumy department are. I don’t know a single thing about it! Must check it out.
I volunteered several years ago to participate in The Arthritis Research Center National Data Bank for Rheumatic Disease “Arthritis Research Project” (what a mouthful!) and routinely I get a packet with a questionnaire and the NDB Research Newsletter. I have returned the questionnaire a few times, but usually I forget about it. But, I’m wondering if it’s just for people with rheumatoid arthritis or if it includes psoriatic arthritis, too. It does mention fibromyalgia along with arthritis in some of the questions, so I’m thinking it pertains to all inflammatory arthritis. I have a packet right here in front of me and, because I’m thinking about it, I’ll fill this one out and return it TODAY.
I just think there are so many things specific to PsA that it would be nice if there was a research project ONLY for psoriatic arthritis. I think our voices should be heard…
Or rather if you are taking Biologics will damage continue? My Rheumy said it will not arrest the progression of new bone growth in the spine, so once the fusing starts it will continue. But the main thing is protecting the major organs and preventing possible cancers caused by inflammation.
I’m in the relatively early stages of researching the disease and treatment.
Just when I think I have an understanding I realize that I haven’t and that it’s far more complex than I thought
I came across a good article online that gives a good overview of the treatment process. One of the authors is Dafna Gladman from the Toronto PsA clinic.
@Jon_sparky, thanks for that KPMG document. Very interesting! I was particularly interested in the problems they identified in the diagnosis of PsA.
Ktel, that is a really good article. I consider Dafna Gladman to be the great grandmother of PsA treatment. Patients who opt for the Wednesday clinic at Toronto Western get to see her personally.
