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...
Now......here's the monkey in the wrench:
Most people think of psoriasis as white/silvery scales on the body.
In Psoriasis, it can almost mean something as little as dry. brittle nails, heavy dandruff, or ridges on the finger nails.
The ONLY "psoriasis" I have ever had involves the nail ridges. The ridges go in the same direction as the finger. And mine are only on a couple nails. They seem to appear when I'm flaring. And guess what......this in itself doesn't mean Psoriasis.....other autoimmune diseases have been known to be associated with it.
Oh yes, I"m also sero-negative RA.
Three things are important for you to know:
1. The treatment is identical for PsA and RA.
2. There is such a thing as sero-negative RA [just because your lab tests come back negative for RA, doesn't guarantee you don't have RA]
3. A rheumatologist is essential in your medical management. I would NEVER let a nurse or tell me anything, and I'm sure the doctor wouldn't appreciate her doing so either. Make an appointment with a board certified rheumatologist. If you are already seeing a rheumatologist, I'd probably look for another one if yours relies solely on blood test results for a diagnosis.
Good luck.
Lynn
I also have sero-negative RA, and did not post a number for 4 years. Now, I have some low numbers, except last year when I was not on anything and they went up.
I do think you need to consider sero-negative RA. As Lynn says, you may have both like her.
And since the treatment is the same, probably not much to worry about. I did have a friend with PsA and in the state where she was, PsA treatments were greatly restricted. It is a shame she got that diagnosis, because some of the RA meds might have helped her. As it was, nothing worked and she had to quit working, and with 4 kids to support, that was really hard.
I had no idea that so many can have PsA with no psoriasis! I've had redness forever- and very sensitive skin. Treated for rosacea for many years and had scarletina twice. Not sure if that's important but will mention it at appt.
From what I gather PsA looks different on MRI because it does something with tendons. My right foot around ankle stays swollen and I think this is a difference in the two. Not sure- but have asked to have MRI report mailed to me.
I'm interested in the DNA testing, as I'm adopted by my late father and unsure of 1/2 my genes. I can't remember anyone on Mother's side with psoriasis, but will try and research this too.
I thank you so much for your comments and the PsA education. I look things up online, but never seem to understand exactly what I'm reading. Hearing from someone who has it and knows is so much more informative!
Again, thanks for your time. I'm thinking if I don't get any real answers with appt next month, I'll need to move to a new doctor. I hate to, really like mine, but feel after 3 years, blood work, and a hand and later a foot MRI we should be nearer some sort of diagnosis.
Another odd thing...the more stressed I get the redder my affected joints appear.
Thanks again ~S
Get an HLA-B27 test. Many people with P and especially PsA are positive.....but again, it doesn't rule out either P or PsA if you DON'T test positive. Ironically, 95% of all people with Ankylosing Spondylitis are positive for HLA-B27.
I did the swab with 23andme.com years back, before they started including ancestry. I believe later they joined up with Ancestry.com to do the relatives.....been great. I've found a cousin overseas and our DA is so similar.....we've verified our connection through older relatives. Cool.
As far as how PsA and RA look on MRI - PsA mostly involves the joints and the end of the limb, whereas RA involves the joints closer to the center of the limb. [E.g., on a thumb, if the affected joint is closest to the fingernail, it's probably PsA. If the joint is closer to the hand itself, it's likely RA.] There are so many exceptions to the rule and if you're like me and also have OA, then it further comfounds things.
Read the conclusion in the link below.
http://www.ncbi.nlm.nih.gov/pubmed/22595641
http://www.medscape.com/viewarticle/741428_15
http://www.ajronline.org/doi/abs/10.2214/AJR.04.1798
periostitis = inflammation of the membrane enveloping a bone
And just so you know: some rheumatologists believe that sero-negative RA is canceled out if you're later diagnosed with PsA.
And just in case your back is bothering you.....
https://rheumatoidarthritis.net/living/worse-than-or-is-it/
I was diagnosed with psoriasis at age 5. I had plaques all over my body, lost of my hair, it took a while and a lot of work on my Mom's part, to get it under control (it was all topical treatment with multiple products, took an hour or two each day). It has been reasonably well controlled ever since. These days I mostly get outbreaks on my scalp, behind my ears, on my eyelids, sometimes around my mouth and on the soft delicate skin of my upper arms, thighs, and belly. I do not recall it appearing over my joints, not since I was five. I have been getting mysterious fleeting flaming red patches on my finger joints in addition to the day-to-day faint redness.
I have the ridged nails that CaliforniaLynn describes. They have also always been prone to lifting, peeling, and flaking. It's not dramatic, but it is noticeable.
My worst most consistent arthritic pain and stiffness behaves like inflammatory arthritis but it is usually in my shoulders, hips, knees, and spine. My feet and hands are more prone to the cycle of flaring and subsiding. They just seem to be on a different schedule, BUT, I also baby them more. I can't protect those other joints as easily. The swelling in my hands and feet is all over the map some times it resembles RA, sometimes PsA. Other joints are just starting to show subtle signs of redness and swelling.
A family doc diagnosed me with RA as a teenager but it was mild and slow to progress, I managed it with NSAID's for 20 years before things really went south. I've had a rheumatologist diagnose me with RA, then 8 visits and a year later change her mind because she no longer believes in NSAID's (she's moving in the direction of alternative medicine and is starting to say all sorts of dubious things) and believes that if they help me at all, it cannot possibly be inflammatory arthritis. I saw a creep and jerk of a rheumatologist when I was 18, who was dismissive, and I saw a lazy, dismissive rheumatologist.
In hindsight, I've had symptoms of autoimmunity and mild arthritis since I was a child. Physically, it didn't hold me back too much, I was still a great athlete but by high school I was dependent on large doses of ibuprofen. The fatigue and malaise, sore throats, low grade fevers, stiffness, have always been a problem.
I've also always had the ability to turn my wrists and ankles and create the most sickening series of popping sounds that most people have ever heard. I've also felt the need to relieve pressure in my finger and toe joints with popping since I was a child. No doctor has ever considered that to be an issue, however, in the last year, almost all of my joints have started popping involuntarily. Stuff that never popped before, and it coincides with the worsening of all other symptoms. I've read on this forum that a lot of people with RA have this happen ...
My tendons seem to be deteriorating first, my joints, we're not sure. I've had MRI's for torn tendons that showed deterioration of the AC joint, but they weren't ordered by a rheumatologist so the radiologist wasn't looking for RA. Xrays and labs are all clear.
Because my symptoms don't all neatly fit into one basket, rheumatologists seem a bit perplexed and less certain of making a diagnosis and treating me accordingly. For this reason, I think exploring PsA is important. If I have RA and PsA, then they know what to do and I can move forward. It feels really, awful, downright depressing, to have a questionable diagnosis and no treatment plan.
Since I don't have the dx yet, I don't know if that helps or not, but I find it useful to read about other people's onset and diagnostic experience, so I thought I'd put it out there for you.
I understand the frustration and have only had a few years of it Etain- it does indeed sound more like PsA and hope you can get it figured out soon.
I'm anxious to see the MRI report and hear what the doctor believes at this point. I had no idea you could have PsA without the plaques~ and this discussion has really been informative. Also, I will go back to the sites when I have my report. Possibly I can at least begin to make sense of this before moving forward.
My doctor is good, but not sure she's using all that's at her disposal to figure it out. At the same time, it seems so much of it looks like "something else" or "the same as" I might not be correct about this.
Going to watch the nails- and take a picture to show her if needed.
Thanks again- this is all very helpful. S
I think this is the time for you to push for DMARD treatment. It saddens me to see that you've gone so long without a real diagnosis.
Again, the treatment for RA/PsA are identical and at the very least, I would push for MTX as a starter, with the understanding that if it doesn't work after 6-8 weeks, you'll add a biologic to the arsenal.
If you were in CA I'd tell you to see my own rheumatologist, who is highly regarded in the national medical community, and who diagnosed me without MRI's. [Later MRI's would confirm his diagnosis.]
The take away message I want you all to have is that after 20+ years of these diseases, the first 15 of which barely halted the progression of the diseases, I now have an excellent quality of life. Granted, I', in my late 60's and old age is now the new thing to be dealt with, but all in all, life is good. There's hope for everyone!
Shanr -- once you get your dna test results, let me know if you need help interpreting the raw data for medical info. Ancestry doesn't give medical results, and 23andme gives very limited medical information. But you can upload your raw data into third party apps or review each snp individually to learn much, much more. It's very interesting but can be complicated to understand. Genetics has become a fun hobby for me the past year, lol!
The old rheum did diagnose me with seronegative RA based on exam, symptoms, and a strong family history and she treated me for it for the better part of a year. Unfortunately, I have already been through most of the old school DMARD's. We never had a chance to figure out if any of them worked because I'm developing drug allergies like they're going out of style. Allergic to sulfasalazine and plaquenil, I was unable to tolerate MTX because apparently I can take all the folic acid in the world, my body doesn't metabolize it. Got labs done today, my liver is finally back within normal limits, by one point, yay! I could only tolerate half the effective dose of Imuran due to severe cognitive dysfunction, so that one's kind of pointless too. The next step was supposed to be a biologic, but my old rheum is moving towards alternative modalities and starting to say and do really dodgy things. Her ego seemed wounded when the pain management doc did more for me in one visit than she had done in a year, she swore up and down that if Indocin gave me any relief what-so-ever, then it isn't inflammatory arthritis because NSAID's don't treat inflammation. Yes, she really said that, repeatedly. When I asked about buying a more affordable B complex, as in, not the one she sells, she expressed the opinion that taking B vitamins from cyanocobalamin is like taking cyanide daily, which is true, but also insane, the dose is so low that it's about as toxic as a glass of water. At one point, she reversed course on my NSAID's and Prednisone, saying I should just eat more vegetables. I probably eat more and a greater variety of veggies than 95% of the population. At the very next appointment, she was recommending prednisone and NSAIDs again. It was quite the roller coaster. We fired each other, nicely.
I saw a new rheum last week, he was totally dismissive. He doesn't deserve to be paid for that appointment.
I found another one to try. I called his office and questioned his staff, he treats a lot of seronegative patients. She says he's very compassionate, older and very experienced at making seronegative diagnoses. She said that he does and will make a diagnosis based on exam even if the tests are negative. He also has a large number of reviews online, all five star. So, let's hope he accepts me and is all he's cracked up to be.
If not, the old rheum recommended someone at Henry Ford in Detroit, which is one heck of a drive, but I'll do it if I have to. I checked with U of M, if they accepted me, they would assign the doctor and I'd be lucky to get in this year ... So yeah, the guy who's only an hour away and accepting new patients sounds pretty good :)
I am 100% on board with starting biologics tomorrow.
In the mean time, I got a solu-medrol injection today. Hoping I get a brief reprieve.
I'm really sorry to highjack ShanR's thread, but you never know what tidbits might be helpful...
PsA hits the places where tendons attach to bone, the entheses, causing, you guessed it, enthesitis. A classic place for trouble is where the Achilles tendon ties in at the back of the foot. If this is where your swelling is, good guess as to what caused it. PsA can also cause overgrowth of a particular type of bone at the joints, and that may be what they are seeing on imaging.
One of the criteria used to diagnose PsA is the LACK of positive blood tests. Mine are always perfect; even my ESR and CRP don't rise. Look at CASPAR http://www.rheumtutor.com/caspar-criteria/ the newest criteria for diagnosing PsA. Do you have any close relatives that have had psoriasis? Or funny, undiagnosed rashes? Or who wore long sleeves, even with temperatures in the 90s?
There is no apparent correlation between the severity of PsA and the severity of Ps. As Lynn says, a number of people never do have actual psoriasis. That said, there are several different types of psoriasis, and they are not all as simple to diagnose as plaque psoriasis.
Etain: if your current rheumy says that non-steroidal ANTI-INFLAMMATORY drugs have no effect on INFLAMMATORY arthritis, I can see why you are concerned. Sounds like that one has gone around the bend, and she's probably not coming back.
Second, according to my rheumy, if a patient presents with joint pain and a history of psoriasis, the difficulty is in proving it is anything OTHER than PsA. Makes sense to me.
Again, many thanks! Shannon