All of these years, my mom has been told that her IP joints all have osteoarthritis. They are almost all not moving, and very malformed looking. Ugly hands. It had been suggested over the years that possibly it was RA, but blood work was clear, etc. So she's been having a lot of pain in some joints, and had imaging done again. Mind you, pain bad enough it felt like a finger was broken. Here is the radiology report.
Reason for study: Pain and swelling. Findings: Multiple views of each hand were obtained. Bones are normally mineralized. There are advanced arthritic changes seen involving the IP joints of both hands. The bones are normally mineralized. The arthritic changes seen at individual joints range from complete ankylosis to severe arthritic changes with marginal erosions and some proliferative bony formation along the margins of each joint. The findings suggest a rheumatoid variant arthropathy such as psoriatic arthritis. (emphasis added) On the left side the DIP joints of the long finger, ring finger and little finger as well as the PIP joint of the index finger are ankylosed. There are severe arthritic changes seen involving the DIP joint of the index finger and the PIP joint of the ring finger and soft tissue swelling is seen about individual joints. The wrist is considerably better maintained. Incidental findings here are of 2 to 3 mm of ulnar minus variance and mild osteoarthritic change is seen involving the CMC joint of the thumb. On the right side there is ankylosis of the DIP joints of the long finger, ring finger, and little finger as well as the PIP joint of the little finger. Severe arthritic changes are seen involving the PIP joints of the ring finger and index finger. With regard to these two latter joints there appear to be marginal erosions and subchondral cyst formation. This is true to a lesser extent with regard to the DIP joint of the index finger. Once again there is diffuse soft tissue swelling involving the digits particularly centered about the IP joints. The wrist is symmetrical to the contralateral side with 2 to 3 mm of ulnar minus variance and only mild osteoarthritic changes seen involving the base of the thumb at the CMC joint.
So are they seriously saying that she could have been treated all these years?!? Seriously? They should have been thinking autoimmune all along, since she has type 1 diabetes.
It looks like a definite possibility. What a frustrating and heartbreaking thing to consider. Definitely worth a conversation with her doctor - or a new doctor, if that's what's called for.
HI Stoney! It makes you wonder how many people are being misdiagnosed everyday. And misdiagnosis would essentially lead to incorrect drug protocols and undue pain and suffering. I wonder how MDs are educated about the range of arthritis conditions and whether generalists or family doctors are hesitant to make rheumatology referrals.
Indeed, Jane, it makes you wonder. Stoney, what a bomb to drop just when you’ve got your hand in a cast because of PsA! I must say, though, that i’m impressed with the radiologist’s attention to detail, and the fact that s/he even suggested considering PsA. (Your jaw must have dropped …) But, as I understand it, the line between OA and PsA is fuzzy. In psoriasis, there’s something called the Koebner Phenomenon, wwhere an injury to the skin causes an outbreak of P in that location. It’s suspected that the same thing can happen to the joints – trauma (wear and tear OA?) can perhaps set off the PsA. Google “deep koebner”, it’s interesting.
That said, after losing two knees and having foot erosions, I argued with my GP about whether my hip damage could possibly be PsA. For me, it was no-brainer. She, though, insisted that it was OA, and that I could have both. Well it wasn’t OA that rotted my hip out. My surgeon confirmed after surgery that it was PsA.
There’s a saying in medicine that “When you hear hooves, think horses, not zebras.” For some GPs, and I also suspect some rheumatologists, zebras are mythical creatures like unicorns.
Yes, it sounds like your Mom’s hand damage should probably have been looked at more closely a long time ago. It’s a story that, sadly, many of us know only too well.
Nurse your hand, and I hope you’ll be able to get your Mom on the road to proper diagnosis and treatment.
I may be over-sensitive to this since my road to a diagnosis, but:
A couple of years ago my maternal aunt, who was in her late 70s, suddenly started having lots of hand problems. She was sent to a rheumatologist who told her she had a combination of inflammatory and osteoarthritis. She has been offered little treatment except OTC anti-inflammatories. Her mother (my grandmother) also developed hand problems late in life.
My paternal aunt, who will be 93 this month (damn!) has significant spinal arthritis. She had surgery a couple of years ago.
I'm the first in my family to have psoriasis and/or psoriatic arthritis diagnosed. I wonder if I just come from a line of late bloomers who have been written off as old. Neither of my parents has had osteo. Dad died at 81, Mom is 86 and going strong. How old is your mother, Stoney, and how old was she when her hands started acting up? Does age hinder diagnosis?
Isn’t that an interesting question, Louise: does age hinder diagnosis?
My knee jerk reaction is “Of course it does!”. My mother got hand problems, starting in her 60s. Trigger fingers, carpal tunnel, etc etc. As the years went by, she developed pain in her hands that would make her cry. Doctor prescribed heat. She was tired. Depressed. Her eyes were terribly dry and she had blepharitis. She had a terrible eczema in her ears. That was supposedly from her hearing aids. She had crusty patches on her scalp. Dry skin they said. It was all written off to old age and things associated with aging. Look at that list, just look at it. How long she suffered from PsA, we’ll never know. It breaks my heart.
And as for me, it was always menopause and a long career on my feet that were to blame. Yes, I do think my age hindered my diagnosis.
Then there is/was the old age of our parents... my mother was diagnosed at 87 and not even then because it was what she was after she had broken her hip. She had it as did her father. But what were you going to do? these people came through two world wars the great depression and they were going to complain about "old age stuff?" Seenie and I (and others) are in the in between - we eventually came around to realize NO we didn't have to just live with it. (but our mothers are always in the back of our heads "everybody has a cross to bare") Sometimes it frankly is hard to look at folks the age of my children/grandchildren (basically age 45 down) and say "Waaaaa? Get a life and get over it and on with it." It is the same disease the genration before us dealt with into old age with NOTHING We need a little MORE of their spirit while at the same time getting treatment.
Wow, that's crazy. I can't help but think of what your mom must have been going through over the years. The medical community in general needs to get it together when it comes to PsA. Wow.
I have what I am tole is bunions on one foot, I really think it has a connections to PsA. I really don't think the docs know much at all but they won't admit it.
I think my grandmother had PsA, I remember from when I was young her feet especially. It really makes me wonder about everything.
Then too, there was a period when you were probably lucky to escape diagnosis when the recommended treatment started with 120 mg of prednisone a day. That didn't wear well for too long.
PsA did not get recognized until the '60s. So most of our grandparents and parents avoided any diagnosis or got lumped into other diagnosis like OA and RA. I went looking through my family tree. I found Hannah Dustin who was kidnapped by the native people, scalped her captors as they slept after they murdered her newborn and force marched her 150 miles over 4 days. She returned to Haverhill and cashed in their scalp for money! Oh my! But I also found hints there may have been PsA going back quite a ways. Some of the cardiac deaths described a disfiguring skin condition that "he had all his life" might be P and a great uncle who died in his 30s after being "a cripple" all his life, most likely PsA IMHO. I think it has been around our family trees for generations and now there is diagnosis and treatment. We are the lucky ones.
Then too, there was a period when you were probably lucky to escape diagnosis when the recommended treatment started with 120 mg of prednisone a day. That didn’t wear well for too long.
I asked her when she started having problems. It was in her late 40's, and she quickly had one finger that had people asking her what was wrong with it. In other words, visible damage. She's now almost 69, and her fingers have been pretty damaged, visibly for over 10 years. None of the IP joints have any significant movement. What I also find interesting is that there aren't bone spurs/overgrowth at the joints. Rather there is diffuse soft tissue swelling.
Louise said:
I may be over-sensitive to this since my road to a diagnosis, but:
A couple of years ago my maternal aunt, who was in her late 70s, suddenly started having lots of hand problems. She was sent to a rheumatologist who told her she had a combination of inflammatory and osteoarthritis. She has been offered little treatment except OTC anti-inflammatories. Her mother (my grandmother) also developed hand problems late in life.
My paternal aunt, who will be 93 this month (damn!) has significant spinal arthritis. She had surgery a couple of years ago.
I'm the first in my family to have psoriasis and/or psoriatic arthritis diagnosed. I wonder if I just come from a line of late bloomers who have been written off as old. Neither of my parents has had osteo. Dad died at 81, Mom is 86 and going strong. How old is your mother, Stoney, and how old was she when her hands started acting up? Does age hinder diagnosis?
Thanks Laura. My parents emailed me the report, and I copied and pasted. No points there.
She has had a lot of connective tissue troubles and a lot of surgeries and lots of cortisone shots. Carpal tunnel, rotator cuff, trigger fingers, multiple back surgeries, with fusion. Lately her elbows have been giving her a lot of pain, and her neck. But I'll point out that she uses a walker, and some of this may be associated with leaning on the walker. The finger pain, it seems to be specific joints these days. All of the other pain, there is a high correlation of many of these with type 1 diabetes, which she has.
Update on my mom. . . She saw her rheumy today, and was started on 12.5 mg MTX per week. I reminded her that it will take time, and it doesn't work for everybody. There are other meds in the same category.