I think I understand most of this, but desperately want someone who has seen this before to tell me what they think. I went to see my Rheumy and basically after leaving his summary notes said "patient is doing poorly. Dactylitis in right second and third finger and Right second toe. Also swelling in left ankle." Given Diflunesol and MXT. X-rays showed "osteopenia in a periarticular fashion of MCPs. Lucency left third MC head. Concerning for early erosion. Joint spaces preserved. Normal alignment." What the heck does this mean?
Dactylitis is the medico word for sausage toes (or fingers), so you have swelling and other weirdness in those digits (there are google images of sausage toes and fingers). Mine is present in my hands but worse in my feet. My rheumy always checks my hands and feet when I see him. Since I've been in treatment, mine is a bit better. I can tell because my wedding ring is looser than my simply losing weight would cause it to be).
That swelling in your ankle may be a permanent thing--my right ankle is permanently swollen in one spot. It gets worse when the PsA decides that particular joint should be painful (or I forget to plant my feet rather than stay up on my toes when I exercise in the swimming pool).
Periarticular osteopenia means there is some thinning somewhere in your thumbs. Osteopenia is a step down from osteoporosis.
there is a particular type of degeneration of joints with PsA that happens in the fingers and or toes called pencil in cup, as that's what it looks like. The appearance results from periarticular erosions and bone resorption giving it the appearance of a pencil in a cup. That's what's being described.
I would think your therapy should be as aggressive as it can get.
Thank you both... I do not have an appointment with my Rheumy for 3 weeks. I was only on NSAIDS for 4 weeks, and both doctors agreed that I needed to go on a DMARD. I really feel like this is coming on with a vengeance.... If I woke up and didn't hurt, I would think I was dead. Should I push for biologics?
Absolutely push for biologics......................
I began to feel better when I started methotrexate (MTX). However, I didn't notice real, sustained improvement until I began injecting Humira almost 3 years ago. I agree with Lamb--go for the biologic.
The other thing, too, is my rheumy told me what damage I had was done and could not be undone. With MTX and the biologic, we're fighting to at least slow down damage and making a good job of it.
Third is the damage inflammation does to your entire body--the biologic also helps with that (the real sustained improvement I spoke of). I also haven't experienced bone-crushing fatigue since I began MTX and definitely since Humira. I get tired--there are days when I ration my energy--but I can do more in general AND I want to do more. I have my life back, albeit with a hitch in my git-a-long, a wheelchair for long distances and concerts and an improperly surgically repaired left shoulder.
I agree with Tlamb. You have multiple involvement and now visable damage. Time to take some of the pleasantries out of the appointment and play hard for bios! I don’t know your situation but being the “bread winner” for a family of 5 got my rheumy to take me very seriously when discussing my can’ts and my pain, especially related to my inability to perform at work. Maybe even bring some documentation regarding when a normal shift to biologics is recommended because you do fit the criteria as far as I can tell. Good luck and keep us in the loop.
I just talked to my cousin who is an MD in Infusion Therapy at Shands in Gainesville, FL. He looked at my bloodwork and x-rays and is getting an appointment for me with another Rheumy because he said my disease is very aggressive and because I am 47, with soon to be 13 year old twins, that I need to be on a more aggressive therapy. He said that I would be in a wheelchair in 10 years if I didn't do something... Maybe he was just trying to scare me - it worked and I am already scared.
It sounds to me that talking to your cousin was a great idea and I'm sure through his connections he'll find you a rheumy who won't mess about. I know it's easy to say when you've just been blindsided by the diagnosis and severity of the damage already visible but please try to turn this round into a positive and pivotal moment ... one where you (and a good rheumy) can gain control of the PsA to slow down and alter the disease progression with aggressive treatment.
I have a distant cousin who is a retired medic and when I got myself in a muddle over what to do I picked up the phone ... I was reluctant because I felt it was "taking advantage" but she actually told me off (kindly) for not phoning sooner ... anyway her advice and support was invaluable. I think we both have great cousins :-)