Hi all - hope you're having one of the better days today. Just wondering if anyone else has been diagnosed with the above like me, according to the rheumatologist's clinical letters which he's been writing to GP/others for the past two years? I don't really understand what it actually means and googling it hasn't helped. When I asked Rheumy nurse, she said it came under the umbrella of Rheumatoid Disease and just to put "Rheumatoid Arthritis" on any forms, such as travel insurance questionnaires. I am sero-positive for rheumatoid factor and anti-CCP positive, failed on Sulfasalazine due to severe allergy, now on Methotrexate for the past 18 months and about to add in a biologic (Benepali) on Wednesday because the Mtx has not controlled the regular flare-ups/fatigue/brain fog which knock me for six and ultimately forced me to give up my job last year. I have two other longer-standing AI conditions - hypothyroidism and colitis so I feel it's a bit more than "likely" that I have RD/RA, especially as I obviously now fulfil the criteria for a £10,000/year biologic drug! The thyroid issue is well controlled with medication and, funnily enough, the Mtx has done wonders for the colitis symptoms so I've been off medication for that for a year - yay! Granted, my hands and feet are the most badly affected bits of me (shoulders/knees less so), so I understand the term "peripheral" - what I'm struggling with is the spondyloarthropathy bit. Online info seems to indicate that "spondylo-" refers to spinal issues but I've had no back problems at all. I suppose it's not that important what they call it, as long as I am on an effective treatment regime which my Rheumy feels is appropriate, but I'd interested to know if anyone else has this diagnosis. I suppose the actual term used for my condition could be important somewhere down the line if I needed to, say, claim welfare benefits or need care …… I do sometimes feel like a fraud because I apparently suffer from such a vague condition, as least on paper! Luckily for me, hubby supports me financially and physically at the moment - and I| really do feel for the many lovely folks on here who struggle to get the support they need.
"Likely peripheral spondyloarthropathy": Hi all - hope... - NRAS
"Likely peripheral spondyloarthropathy"
It's very frustrating to have a diagnosis that no-one else understands!
It looks as if your diagnosis is that of an auto-immune arthritis, so you would be quite correct to put Rheumatoid Disease on any forms. The term of Rheumatoid Arthritis covers a large number of conditions which behave in slightly different ways, but so far (and I do mean currently) the treatment is suppression of the immune system by trial and error to find what suits that particular person.
I think the dx of spondyloarthropathy is because you probably have the genetic marker of HLA B27 and a pattern in your peripheral symptoms that fits the dx. I had a spondyloarthropathy dx along with seronegative RA, but am in remission right now. It is for clarity on the part of the rheumatologist. Treatments for many rheumatoid diseases are the same or similar. Good luck!
Thanks for your reply - I'm glad to hear that you're in remission at present. My Rheumy did a test for HLA B27, the result of which was negative and he told me that was "good news" for my spine! I think I'll ask him if he can explain my dx to me in more detail, next time I see him in 6 months for a review of how things are going on Benepali - I am due to have my first dose of this later this morning, eek!