A recent Canadian research survey on people with Psoriasis (not Psoriatic Arthritis), called the SKIN study (cute) suggests that PsA could be widely underdiagnosed. The article I read about the study states:
The SKIN survey reveals that half of all respondents [with Psoriasis] reported that they had developed joint pain or stiffness, but only 18 per cent of these respondents had ever received a diagnosis of psoriatic arthritis.and...
Respondents reporting no psoriatic arthritis diagnosis indicated that they experienced stiffness in the knees, shoulders and hips (48 per cent), followed by pain or stiffness in the finger joints (38 per cent) and toe joints (23 per cent).Underdiagnosis concerns me for two reasons - firstly, of course, I don't want anyone else to experience the pain I experience. But secondly, fewer people diagnosed with PsA means the research community will be less likely to study PsA.
A while back I wrote about the lack of research and basic information about Psoriatic Arthritis, as compared to Rheumatoid Arthritis and Psoriasis. Here's the link.
Here's my point: fewer scholarly articles on PsA will lead doctors to make fewer diagnoses, AND, the lack of PsA diagnoses certainly has an effect on how much research is undertaken.
So if you're out there with P, and think you have PsA, please consider getting a definitive diagnosis.
You know what they say about the squeaky wheel, after all. I'm up for some grease (and I'm not talking another ointment).
Posts
I was misdiagnosed/underdiagnosed for three years, have suffered much pain and finally put my foot down and found a doctor that listened to what I was saying.
ReplyDeleteYay! I think there is a lot we can do to advocate for ourselves, and by advocating for ourselves we can educate our doctors!
ReplyDeleteBe well...
Jenny
Amen, sister! I saw so many orthopedists over 25 years, none of whom had a clue about psoriatic arthritis and who said there was nothing wrong with me. Another thing is that many people with PsA have more problem with tendenitis than with joint pain per se. They don't even realize that this is a sign of PsA and they don't seek help or a diagnosis. Then there are those whose main symptom is costochondritis or uveitis or some other non-joint-pain symptom...
ReplyDeleteIn just a few years, the estimate of incidence has risen from 5-6% to 10-30%. I agree with you that it is likely much higher, probably closer to 50% at any given time but perhaps closer to 100% if you look at the lifetime of each individual. In other words, if you have P and you live long enough, you will get PsA.
I have been suffering in pain for a couple of years now. It was recently that I finally did a little research and TOLD my doctor that I believed I had PsA. He referred me to a Rheumatologist who confirmed my self-diagnosis. After fighting with my insurance company to get them to pay for Humira, I took my first dose this past Tuesday. Can you tell me how long it might be before I start to see some relief? I know everyone is different, but would be nice to have a ballpark :-)
ReplyDeleteHey Dawn - with me it took about 4-6 weeks, but I know everyone is different. Plus, Humira has not been my drug... I'm now on Remicade, which I like much better. It just works better for me (plus the folks in the infusion room are hilarious).
ReplyDelete;-)