Getting a correct diagnosis

Hi all, I have posted a couple times before and you have been so helpful. In about 10 days I’ll be seeing my rheumy for my third visit. The first appointment she suspected PSA and did xrays and blood work. She checked my joints and I felt like she cared. Two weeks later she told me I had arthritis in all my dip finger joints, my si joints, and my toes. She said my blood work was “unremarkable”. Told me it was oa and that was that. Believe me, I do not want to have PSA, but truthfully i am scared. I have days when I am totally exhausted with no reason. I have had to cut back on my work hours, my feet are killing me. (Plantar fashititis) I have four fingers that are very noticeably deformed and painful to use. I just want to make sure this doesn’t spin out of control and I end up with more joint damage than I already have. I have seen a dermatologist (psoriasis is mild) and an eye doctor for my dry eyes- mostly just to get more in the medical field involved. I had pictures of my swollen fingers and also had written a log of how I was feeling. Rheumy said she had to witness personally. I just want to make sure I am getting a well thought out diagnosis, not just being dismissed. Any advice in speaking with my rheumy would be most appreciated.

Are your fingernails pitted or deformed at all? I remember doctors always looking at my fingernails. Somewhere around the time my fingernails started looking weird is when I got a firm diagnosis. I actually wasn’t looking for that–I only remembered reading how rare PsA was so it never concerned me I would have it, even though my psoriasis started in my early 20s and I was in my early 50s before I started having strong indications of PsA, gradually, after having a few joint and tissue problems over the years. It will be good if your rheumy comes to her senses with your next visit and makes a diagnosis so you can get the proper treatment. Good luck! The sooner she gets you on the appropriate meds, the better chance you have of stopping the damage–which so many of us did too late.

Hi Vogele.

I think Grandma_J gives good advice re. checking your nails. As I understand it about 80% of PsA patients will show some nail involvement which may be higher than the figures for current skin disease. Psoriatic nails do not necessarily look too bad, or at least mine don’t. If any of yours are at all thickened or funny-looking you could ask for a nail biopsy to exclude the possible explanation of fungal disease.

I would emphasise the fatigue. If rheumys had dismissed my fatigue I would have pointed out that having had 3 children and routinely worked more than 60 hours a week I knew what ‘tiredness’ felt like and that the fatigue was not normal. If you may be going through the menopause currently then all you can do is to emphasise that it should not be allowed to muddy the picture. And PsA does not necessarily show up in bloods, again this is something to mention I think.

As you say, you do not want to have PsA. And of course you may not have it but from what you say I’d share your suspicions and misgivings. I’d probably say exactly the same thing to the rheumy on the grounds that they do not know us personally and may see people who fall into the category of the ‘worried well’. It’s a case of “I want to ‘just’ have OA (though heaven knows that is bad enough) but I honestly think something else is going on and am concerned about missing the window for early treatment”.

Generally speaking perseverance seems to get us there in the end. But I’m so hoping you get conclusive answers that make sense to you sooner rather than later.

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I was diagnosed 9 years ago. My blood work has always been “unremarkable”, other than a mild anemia. That didn’t stop my rheumy from diagnosing me with PsA and treating me properly. I guess my point is that if your doctor is relying only on blood work, get a second opinion. There are enough people with seronegative PsA and other autoimmune diseases that this shouldn’t be ruled out.

Thank you all for your helpful replies. My nails seem to be OK, the only change I have noticed is that the sides of my nails are flipping up, don’t know how else to describe it. I keep them trimmed quite short because it looks odd and gets caught on things. Does anyone else have osteophytes in their finger joints? I know this was another reason my rheumy declared OA

Osteophytes are the hard lumps, right? I have those and rightly or wrongly I’m okay with the idea that they are purely OA i.e. not secondary OA caused by PsA, as can happen. I guess that’s because the affected fingers do not hurt in the same way as PsA does, variable as the types of pain are. OA of fingers also just seems so common, too. But I still have PsA …

I would consider any nail changes worth mentioning and checking out.

My rheumy told me this week that my hands and fingers feel really good–not inflamed as they had been a couple years ago, and those “osteophytes”, if that’s what the joint lumps are called, are also for me a symptom of OA. Some of my fingers do get stiff lately, but there is usually no swelling or redness and warmth in them like there was when PsA was active. My lumps don’t hurt either. Every one of my mom’s finger joints has those huge lumps and she still uses her hands to sew and do things, although they are so crippled they don’t turn lids off bottles very well because she has lost the ability to grab tightly, but she doesn’t have PsA and they’ve never looked swollen or inflamed.
OA in knees and hips, though, can be really painful–luckily I don’t have problems in those joints–and I’m sure if you have OA there with PsA it’s totally unbearable! My mom had a knee replacement and her OA was really bad and caused horrible pain. It seems so obvious where there is OA but also PsA–the symptoms of fatigue, fingernail involvement, inflammation, psoriasis, etc., etc., IDK why it’s so hard for some rheumies to make the diagnosis!!!