I’m 47 and was diagnosed with rheumatoid arthritis 3 years ago. Methotrexate with enbrel and humira have not been successful and my diagnosis has been changed to psoriatic arthritis. However, there is some doubt that the psoriatic arthritis is the sole cause for extreme pain in my ankles, feet, back,hip, jaws and shoulders. I guess because all of the genetic and blood markers are negative? I have also been diagnosed with primary adrenal insufficiency (autoimmune) and am cortisol dependent. My understanding of psoriatic arthritis is that it does cause significant pain and typically causes significant swelling in the soft tissue associated with the joints. Do any of you have a similar experience with your diagnosis, test results, and symptoms?
Yes , I have pain and swelling in my feet , ankles and legs a good deal of the time.Also , my wrists are hurting right now . Blood work is a good indication of how your disease has progressed . There can be days whenjust everything hurts and you feel very fatigued . Ice or heat your joints which ever works for you , also antiinflammatories such as Motrin for the pain and rest . Take care of yourself
My markers were negative, but there's been no doubt about my diagnosis because I've had pretty classic symptoms. My understanding is that 50% of people have negative genetic markers- I don't know the stats on blood markers (inflammation and sedimentation rates) but there's a book in the book reviews that Seenie recommended that has all of that info- it's available on Kindle and in paperback on Amazon and is pretty inexpensive.
I did learn recently that some of my pain may be due to some of my joints being hyper mobile- a lot of excess movement can cause injury and inflammation, I guess.
Thank you. For all of us that suffer but want to get better, it was just very hard to feel like I was taking a step back today. I understand that up to 50% people with psoriatic and rheumatoid arthritis can have no genetic or blood markers. I suppose that also explains why my body has not yet responded well to any of the treatments. I suppose the big question is what’s next? I really don’t have a joint that’s not affected. And it’s getting worse, not better. Does anyone have MS with psoriatic arthritis?
Yes, Lyndsey, it’s around 50% of people with PsA who have inflammatory markers that are normal or only slightly elevated. Sure makes diagnosis difficult!
From the Newbies’ Guide:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/inflammatory-markers-in-psa
I'm in the 50% with normal blood levels. The only test that's ever been off is my CPK, which tests inflammation in skeletal muscles, I guess, and nobody else seems to have that test. But, I've had psoriasis for 40 years and was diagnosed with PsA 6 years ago. My rheumy mostly looked at my fingernails, which were very deformed with pits and ripples and pulling away. He could also tell by the subtle swelling and stiffness in my fingers and toes, and he could feel it. He was dead on, because when I finally went on Enbrel it helped right away. As far as we knew, nobody in my relation had psoriasis or PsA. (Looking back, though, my dad had some weird "fungus" in his toenails.) I'm so glad my rheumy and dermy were able to figure it out even though I didn't have severe disease. I hope your doctors don't only rely on positive blood tests to get the diagnosis.
Also, Lyndsey, the extreme pain you have, I think, could be related to PsA. My rheumy told me I have a lot of osteo arthritis as well as PsA. Did your doctor mention osteo arthritis? There's not much you can do for it other than pain killers. I've been having a lot of pain in my feet, even though I feel like Enbrel is working for me. The damage from PsA could be the source of pain.
My experience with rheumatologists is that they like to hedge their bets on a firm diagnosis. I started out with a rip-roaring case of "unspecified inflammatory polyarthropathy". My current doctor has said "psoriatic arthritis with axial involvement" and "ankylosing spondylitis with peripheral involvement", about the equivalent to the difference between "reddish orange" and "orangey red". My chart currently lists me as having something like "inflammatory arthritis with psoriasis".
From what I can gather there are two reasons for the coyness: one is that they don't want to put something down in black and white until they are absolutely, positively, sure; and second is that since different drugs, particularly biologics, are officially approved for some conditions and not others, a firm diagnosis can give your insurer a foot in the door to say no to trying something. I'm currently on a biologic that is not approved for PsA, as it isn't too helpful for skin problems.
Here is a link to several different sets of criteria used to diagnose PsA: http://www.medicalcriteria.com/site/index.php?option=com_content&am... The last one, CASPAR, seems to be the current favorite. You will notice that several of them list normal labs as an indication of PsA.
As long as your doctor is treating you appropriately, I'm not sure having a definite name on it is too crucial.