Changing autoimmune diagnosis… of horses & zebras, When is RA not RA?
So here’s the latest, just come from seeing my rheumy and sitting in the Wellcome Cafe…
Brief summary since being diagnosed in 2021, and put on max MTX& HCQ (25mg/ week & 400mg/day) … getting numerous infections as a result of the immune suppression and still barely coping… to suddenly not needing the immune suppressants after a 2 week course of a specific antibiotic…
Got my joints checked… no RA after 2 months going on 3 without meds, just the antibiotics, and limited food intake, no abrasive food or any fibre or any probiotics & living on Complan. (Imagine a cut and abraded arm needing to be kept clean).
However it’s not all roses… I do have dull persistent abdominal pain on the right, there is a sense that the joint inflammation while very slight, does exist, but not bilaterally as in RA, but only on one side or other.
Rheumy took an armful of blood and based on the amazing strength of my grip without meds was persuaded to refer me to a Gastroenterologist.
He asked me what I thought it was… I said it wasn’t RA horses, it’s likely Crohn’s in a bad way giving the appearance of rampant flaring RA, and on me receiving my infection antibiotics , (which are the same for rampant Crohn’s) my symptoms were so dramatically eased.
So maybe out of the frying pan into the fire…
But at least I got a GE referral.
FYI - Crohn’s is also not well understood but it often develops in those susceptible after a lifetime of junk food, sugar and sweetners which allow pathogenic bacteria to flourish, causing the gut to become highly inflamed and be at war, end point being surgical removal if conservative treatment does not work. Sadly if misdiagnosed the high immune suppression for RA allows Crohn’s to worsen as the pathogenic bacteria flourish with the gut defenceless. Reducing these bacterial colonies results in a dramatic reduction in symptoms. Typical symptoms are abdominal pain, irregular movement, minor one sided joint pain but well managed Crohn’s only needs minor immune suppression.
So my RA horses 🐎 may be Crohn’s zebras 🦓 , which only gallop like horses when in a bad state.
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