I read a lot of profiles, and over and over, people tell the same story: I’ve had this disease for many years, but I was only diagnosed recently. Almost all of us experienced a long delay.
So I’ve got a little research project. How long was it between the time you first went to a doctor about symptoms (that you now know were Psoriatic Arthritis) and the time you were told that you have PsA? So …
I first went to the doctor with a really impressive sausage toe and later aches, pains and fatigue in (about) 1990.
Diagnosed in 2011.
No need to tell all the gory details unless you want to! –
I was lucky, and was diagnosed almost immediately. I went to my GP in September of 2007, after having a few painful sausage type digits come and go. She sent me to a rheumatologist, as well as running the basic autoimmune bloodwork and Lyme disease testing. I went to the rheumatologist within a month, and was diagnosed on my first visit.
Again, it was probably there much longer, thinking back to the Raynaud's since I was a kid, multiple tendonitis issues, etc. But when it hit my fingers, I was diagnosed right away. I have always recognized that I am one of the few.
Looking back on it, I had signs before 1990. But I figure the clock really only starts the first time you confront a doctor with it.
You were really lucky, Stoney! As you say, one of the few …
About ten yrs. for me. It started with my lower back pain. I had “tendinitis” in my hands, treating with p.t. For 8 yrs. then my feet got involved with sore toes and pain up to my ankles, almost making it impossible to walk. Then elbows and knees, and , here we are!! But Enbrel w/mtx helped for a while (about one yr.). Now I have been on Remicade for almost a year and I really look forward to infusion day, mtx inj. Weekly and vitamins, etc. Diagnosed 2.5 yrs. ago. Problematic since 1993ish
Diagnosed with P on my first trip to the dermatologist in 1999. PsA symptoms began in earnest in May of 2012 and was seen by same dermatologist’s son who seriously suspected PsA in October. Rheum confirmed it in November 2012. So, less than a month once I went to a doc.
I have had joint pain since high school, but not what I would call PsA like pain. Mostly hips, knees, and deep pain in my femurs, and I clearly remember having pain in my knees in elementary school.
Just four years - 2007 to 2011. It was hard to not diagnose something as I had a large number if inflammatory events each year. Things have quietened down a bit since although have CRP of 79 currently and swollen knee and elbow. No escape from this damn disease. Feel lucky though to be under the care of a specialist rheumatology unit that have time and resources when required.
Over 20 years I believe,started with P when I was 22, at the same time as I had a miscarriage & terrible shoulder issues. (The shoulder I’m finally getting fixed on the 11th)I’m 45 now & was officially diagnosed 21/2 years ago.
I would guess at least 30 years. I fell as a child and tore tendons and ligaments and chipped bones. The doctors thought it was odd at the time but no further investigation. I had P as a child as did one sister. I took myself to a Rheumatologist at age 50 and asked if "it" was PsA. She said no. But 2 years later when I came back she said "yes". I guess the difference was in what she could see. I started a flare at 50 that lasted a few years and there was no more of my denying something was wrong. My Rheumy now thinks the falls I had as a kid was tendon ruptures and then a fall not the other way around.
Interesting about your events as a child! Of course, back then Psoriatic arthritis wasn’t even a known disease.
michael in vermont said:
I would guess at least 30 years. I fell as a child and tore tendons and ligaments and chipped bones. The doctors thought it was odd at the time but no further investigation. I had P as a child as did one sister. I took myself to a Rheumatologist at age 50 and asked if “it” was PsA. She said no. But 2 years later when I came back she said “yes”. I guess the difference was in what she could see. I started a flare at 50 that lasted a few years and there was no more of my denying something was wrong. My Rheumy now thinks the falls I had as a kid was tendon ruptures and then a fall not the other way around.
I’ve had P since I was about 12, always had ankle problems as a child, as in swelling and pain but as I was a clumsy child it was put down to strain’s and sprains. Started wrist tendon problems, which was diagnosed as tenosynovitis, when I was about 23, after the birth of my first son. Ankles joined in and, had these problems on and off ever since, autumn always the start of my pain season. Tests were done but, as is the same now, the inflammation markers were never raised. Shoulder pain started about 15 years ago and as nothing was ever done about my other issues I never went to the doctor (also I was a carer so alot of rolling and lifting of patients in those days) Chest pain started in 2005 which I recognised as bone/tendon issues and started anti-inflammatory meds. When other sites joined in during 2011 and swellings started my GP referred me to the local hospital rheumatology dept where I was diagnosed with PsA.
So who knows how long I’ve had it, its not til Michael said about childhood problems that I’ve started to wonder about my ankle swellings and pain…always seemed to have either one ankle or another bandaged by my Mum cos of another “sprain”.
Before that I would have said maybe getting on for 30 years
32 years. Through my childhood and adolescence I was told it was growing pains. My mother actually apologized to me for not believing me when I was growing up - one day I could barely walk, then the next I was feeling ok...she thought I was acting. I told her not to feel guilty - some of the time I was. LOL As a young adult I was told it was all in my head. Then I was told is was probably something neurological. Then I got pregnant with my first child and spent the next nine years in and out of pregnancy-induced remissions. After having my fifth child, I went downhill quickly, got pregnant, miscarried twins, and then it was a matter of months before I was nearly unable to walk. Then I finally got taken seriously and got my PsA / AS diagnosis at age 36.
I started to have swelling in my fingers in 2005...GP said I needed to give it time to heal and stretch it regularly.
To make the long story short...after being undiagnosed by one Rheumy in I believe 2006, I was finally diagnosed in 2012 by my current Rheumy. That diagnosis was confirmed by the PsA clinic at Toronto Western Hospital in 2013. It took way too long.
I started with aches and pains when I was around 9 or 10 in 2007-08 and the doctor just contributed it with growth pains. In eighth grade I got tendinitis in both of my knees. I finally just let it go and figured they wont do anything. Then in August of 2013 I felt I hurt my back in gym and did 4 sessions of PT and 3 weeks later I went back to the doctor and finally got my blood tested my ANA came back positive, enabling me to to go to a Rhuemy coming to find out it is PsA.
I have had P since I was a young child, originally diagnosed as eczema until 2007. I have had painful feet since 1996 or 97. Went to my family doctor and was told to get inserts for my shoes. After years of going back and forth to doctors with pain in my feet I was sent to an orthopedic surgeon who took the time to listen to me and to run mri, bone scan, x ray and ct scan. Each test showed more and more issues with my feet. In just my right foot I had bursitis, mortons neuroma, plantar fasciitis, Achilles tendon, osteoarthritis and heel spurs. I was sent to a rheumy and immediately I was diagnosed with psa, no blood work needed at the time of diagnoses
Knee, hand, toes and neck pain as a child and mild scalp psoriasis which was called dandruff. I celebrated my 21st flat on my back with undiagnosed lower back pain and this reoccurred from then on.Severe knee, hand and foot pain and affected toenails in my 30's and had both knees relaced in my 50's, psoriasis diagnosed and then, after I demanded I be referred to a rheum, I was diagnosed with PsA. During the period teens to 40 I ran and played football tennis and squash but constantly broke down with flu like symptoms and pain.
About 3 years. But enough time to mess with the osteoarthritis in my spine. Ortho surgeon was the worst doctor because he misdiagnosed me and ignored all my pain complaints. And the rheumatologist I finally went to was just down the hall from his office! I had no idea I had PsA or even that it existed. I got tears in my eyes reading your stories. There is absolutely no reason we have to wait so long for a diagnosis. It's so WRONG!!! So much damage can happen with delayed treatment. So much unnecessary pain and suffering. It makes me sick that so many doctors (and even Rheumys) don't see it. The word had GOT to get out!
Had skin problems since childhood which had been diagnosed as eczema/dermatitis. First time I can remember having a skin issue which I now think was psoriaris was probably about 2001/2 time, I guess. Finally went to doctor with aches and pains (mainly one toe on my left foot) that I'd had for a while in 4Q2011, initial referral was to an orthapaedic surgeon and this led on to seeing a rheumatologist and diagnosis of both psoriasis and psoriatic arthritis in March 2012. So for me from pain crisis to diagnosis was less than 6 months and I think it was only this quick because we had private medical insurance that got me quick appointments with the consultants.
In hindsight, I had lots of tendonitis issues (wrists/feet) going way, way back and also remember having bad right hip pain in 2006 (embedded in my mind as it ruined a walking holiday) and for many years haven't feel as fit as I should be given my activity levels ...... so I think maybe it started a good while back.
I remember putting my back out for the first time when I was 12. My teen years were spent splinted and taped for all sorts of tendonitis issues…I don’t ever remember a time in my life I haven’t been in pain. My first experance with a rhumie was horrible. She basically told me to loose weight and quite my job. I left devastated. That would of been 2004. In 2006 I was diagnosed with my first patch of P. the derm asked me about joint pain then. But t still took a while to connect the dots. In 2010 I was in an accident. I did 6 months of chiro and massage and it wasn’t getting any better. Then in 2011. I partially tore a tendon n my thumb. And again after months of physio the pain and swelling wasn’t going away… In nov of 2011 my gp put a referral in at my request as I suspected PsA may be the cause… It took a year to get in to see the rhumie… I was diagnoses dec of 2012. And I am still in pain ;0(. I was started on sulfasalizine. Did that for 6 months. With minor relief. Been on mtx for about 6 months. Still no great relief. I go back next month. Not sure if she will start biological or wait some more on mtx…
I'm going to give the long long story of my mother now. She has been a type 1 (autoimmune) diabetic since the age of 31 or 32 years old. Because type 1 diabetes is a risk factor or is co-morbid with many different issues, all of her bursitis, tendonitis, etc, were never given a second look. Starting in her early 50's, the surgeries started. Not a big deal at first, started out with carpal tunnel surgery. Then in her early 60's it accelerated. Shoulder surgery was done to repair a shredded rotator cuff, partly due to an old injury. More carpal tunnel surgery, trigger finger release, and the big ones. . . back surgery. She wound up having four back surgeries, and uses a walker due to permanent nerve damage.
Her fingers started to swell and deform probably about 15 years ago, and while there were little noises about possibly inflammatory arthritis, she was basically untreated. She was told by her doctor, when she asked, that they would wind up looking like her own mother's hands had. Well, my grandmother had the most beautiful perfect hands her entire life. My mom basically only has movement left in the MCP joints, and is now looking at having fusion done on two joints, and replacement done on another, due to ongoing pain.
Last year, she had new x-rays done on her hands, and the radiologist determined that it was most likely PsA. She recently started MTX, but if you could see her hands, you would cry. They are destroyed. My mom is 69 years old, and only recently received a diagnosis and started treatment.
We all know the importance of early diagnosis and treatment. My mom will benefit only minimally from treatment at this point, due to the sheer amount of damage done at this point. I imagine how different things would have been if she had been diagnosed 15-20 years ago.