Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
i'll be switching to a new rheumy soon (still haven't decided what to do about that) but at my last meeting with my old rheumy, we discussed the possibility of PsA. i have obvious involvement in my distal interphalangeal joints (topmost joints in the fingers) and twisting in 4 of 10. and pain in 10 of 10. those joints are always in the top 4 most painful joints in my body (others include wrists, hips, ankles depending on the day). i've also recently experiences some serious heel pain (enthesitis?) - both of which she said are classic signs of PsA. she always wrote off my DIP joint pain, saying those joints just aren't affected in RA.
so. i have a strong family history on my mother's side of RA (aunt, uncle, cousin - all started seronegative but developed positive rheum factor years into their treatment). we haven't found any confirmed psoriasis diagnoses in either side of the family. dad has some dry patches that have always been chalked up to diabetes complications, but my brother has had an odd skin thing going on for years. it almost seems like a pigmentation, a bit reddish, that covers parts of his shoulder, arm, and torso. he never had health insurance, so our gp told him to wash it with selsen blue, using it as a body wash, to help it.
just wednesday, i noticed a strange patch on my neck, sort of behind my ear. i had my future sis-in-law (my hairdresser) take a look at it, and she immediately referred to it as a 'plaque'. she grew up with a doctor, so she uses terms like that regularly lol. she said it looks like the same thing my brother has had for years. i'm seeing him later today and will talk to him about it (he's quite self-conscious about it, so it's a very sensitive subject) but wanted to see what anyone else's PsA dx process was like. i know a lot of the symptoms and treatments are the same as RA, but i also know how important a proper diagnosis is for insurance companies and possible disability in the future. thanks in advance :)
so. i have a strong family history on my mother's side of RA (aunt, uncle, cousin - all started seronegative but developed positive rheum factor years into their treatment). we haven't found any confirmed psoriasis diagnoses in either side of the family. dad has some dry patches that have always been chalked up to diabetes complications, but my brother has had an odd skin thing going on for years. it almost seems like a pigmentation, a bit reddish, that covers parts of his shoulder, arm, and torso. he never had health insurance, so our gp told him to wash it with selsen blue, using it as a body wash, to help it.
just wednesday, i noticed a strange patch on my neck, sort of behind my ear. i had my future sis-in-law (my hairdresser) take a look at it, and she immediately referred to it as a 'plaque'. she grew up with a doctor, so she uses terms like that regularly lol. she said it looks like the same thing my brother has had for years. i'm seeing him later today and will talk to him about it (he's quite self-conscious about it, so it's a very sensitive subject) but wanted to see what anyone else's PsA dx process was like. i know a lot of the symptoms and treatments are the same as RA, but i also know how important a proper diagnosis is for insurance companies and possible disability in the future. thanks in advance :)
I'm seropositive and was dx'd with PsA 3wks ago. I have strange rashes, my nails are affected, feet swelling w/sausage toes, enthesitis in several tendons and spinal involvement. The dx is tentative pending my follow up visit w/my rheumy & a dermatologist to confirm the rashes. I've been complaining about these issues for a while but it took a new rheumy with a new set of eyes to see it. Less than 9% of positive patients get both. Having a family history increases your chances by like 60%. No one in my family has a confirmed diagnosis of either RA or psoriasis.
It sounds like you've got some symptoms especially the fingers & heel involvement. Since there isn't a test it can take awhile for it to be seen & diagnosed. It has a lot of crossover with RA. But like you said, the treatment is the same.
Good luck.
Emerald
From what I've read, about 15% of PsA patients have joint problems before skin involvement, and a few never show skin symptoms at all. If you don't do maincures/pedicures, take a cold, hard look at your nails. Ridges, pitting, lifting, all these point strongly to PsA. Pitting especially can be subtle and hard to see without good light. Dr. Google has pictures, of course. http://nailpsoriasishelp.blogspot.com/2011/12/nail-psoriasis-pictures.html Many others available, too, but many show only the worst of the worst. These are a little more subtle.
Like Emerald, I have no family history of either of these charming little diseases. I developed a small amount of classic plaque psoriasis about 20 years ago. As we all know, though, these conditions aren't strictly genetic, and the tendency towards autoimmune problems means you'll find families where various members have lupus, RA, psoriasis, and Hashimoto's rather than all having the same thing.
Do you have a dermatologist? If you have one (or can find one whose interests go beyond Juvederm) he/she can probably diagnose your skin thing pretty easily, using a biopsy if there's doubt. Some derms actually know quite a bit about PsA, I've been told, although I can't even find one that takes both new patients and insurance.
Diagnosis can take forever. My current rheum thinks I've had PsA for at least 25 years, which means many, many doctors in many different specialties have missed it. Seeing as an article just came out about the importance of treatment within the first six months, this is frustrating. I asked an orthopedic office point blank if there was any chance I had it: their answer was an unequivocal "no". A lot of diagnostic criteria have been proposed: the current favorite is CASPAR. http://www.rheumatologynetwork.com/psoriatic-arthritis/classification-criteria-psoriatic-arthritis-caspar Here's one link- I know you're enough of a science-head to read it! Many others available online.
My diagnosis took a while. My PCP freely admitted she didn't know how to test for it. (Smart cookie: there is no test!) The first rheumy kept me in the unspecified inflammatory polyarthropathy camp. The second one was just a horse's ass. The third one called it immediately.
Many/most people with PsA have normal labs. No positive RF or anti-CCP, CRP and ESR often normal. (This is theorized to be because it hits tendon hard, and they have too crappy a blood supply to raise inflammatory markers.) There is a blood test for the HLA-B27 gene, but that one has tons of false negatives AND false positives. X-rays can show the difference, but they show damage that we hope is a ways down the road. I've heard it described thus, "RA looks like a mouse has been chewing on a joint. PsA looks like a rat has been in there."
Where to go from here? Check and see if there is a PsA clinic or specialist in the NYC area. If you could get in, they may be able to rule in/rule out, then refer you to someone closer to home for continuing care. Since you're between rheumies anyway, that might solve the "Who's next?" problem.
The Living With Psoriatic Arthritis website has some good information. They are trying to compile some complete basic info about diagnosis, drugs, individual experiences, etc. PsA is rare. The average rheumatology office sees RA, lupus, etc., all day long, but may not have any, or only a couple, PsA patients. Another reason to take advantage of your being in or near The Big City to find someone who specializes.
hugs with this new auto immune part of the journey. I am thinking of you and sending best wishes for a new rheumie that you can collaborate with.
Depot
I've been dx-ed with PsA. It took over 8 years to get there and this was with my having narrowed it down and being poo-poo'ed. Seriously: one PCM decided it was just fibromyalgia and allergies (?!?)!
My psoraisis hides in my hair, so no one took that seriously.
My blood works is amazingly unremarkable as altoclef said and my HLA-B27 was negative, but who knows that that means. I do have the classic dactylitis and enthesitis that was brought under control with the max injectible dose of mtx.
My aunt and grandmother had RA too. My aunt is almost incapacitated in her hands.
From what I've read, RA and PsA are nasty little cousis who have the same goal and attack from opposite directions. While RA tends to attack small joints symmetrically (no guarantee on that, though) and spreads to the bigger ones, PsA attacks larger ones in a willy-nilly fashion first and works its way down to the smaller ones. PsA breaks into categories which range from "I think I can handle this" to "oh heck no!" I feel fortunate that my category isn't the mutlians or the spinal one.
A good rheumy can give you the correct diagnosis and good treatment. I felt fortunate that mine was willing to start treatment before he decided between RA and PsA because he planned to treat them with the same protocol. We did testing to set up for a biologic, but I started seeing a naturopath/accupuncturist and that has been helpful for me. I still take the mtx, but the eastern approach to treatment (Their term for this is Bi and mine is the Wandering variety) has allowed me to come off the NSAIDs and pain meds. My energy levels are back up and now all that is left is for me to get in better shape.
I also do Yin Yoga which is PERFECT for PsA and RA sufferers. It is focused on bones, joints, fascia and tissue rather than how Yang Yoga works on muscles and balance. My Yin class is all done sitting or laying down.
Do you have RA too or just PsA? Are you seropositive? Just asking because its apparently rare to have both, especially being seropositive. Sorry for the questions I'm just feeling like an oddball having both.
Thanks,
Emerald
i don't have a dermatologist but my brother and i are both considering going to one. his skin issue is widespread and he's become very self-conscious about it :( it makes me sad that he feels that he has to wear long sleeved shirts all of the time because it comes down over his elbows. i don't think it's *that* noticeable, but he does.
my tiny joints (DIP joints) were the first to hurt, and i've had pain in one of them for at least six years? maybe a bit more. i have to search out a new rheumy to figure out what my next step is. i'm considering going off all meds for the summer to try eastern treatments.... and get a few tattoos ;)
I'm seronegative and currently with only a PsA dx. My inflammatory markers are now under control and life is much better.
from 11/13 to 9/14 I just wanted to die. Now I'm chasing my master's degree, camping, quilting, and being involved. I can picture myself growing old again which I had stopped being able to see in my head.