New diagnosis - struggling to find support
Morning folks :)
My partner (50) has just been diagnosed with ‘seronegative polyarthritis’. He underwent tests for rheumatoid but all negative. He has flare-ups every couple of months, including: random swollen hot painful joints (could be shoulder, pinkie finger (!), ankle, wrist) and a distinctive rash - raised round bumps like hives all over his torso and arms. During these he is exhausted, drained and struggles with life.
I am a healthcare professional (no experience with this) and I feel like we’ve been overlooked and ignored. A private rheumatologist started him on sulfasalazine which we’ve tried twice and had to give up on. The side effects were intense, fevers (with actual high temperatures), rigors/shaking, fatigue and abdominal pain. I pushed him to persevere and try a second time but he had identical side-effects and he just can’t. I called 111 as I understand serious but rare reactions can occur but they were not in the least interested. His bloods after 2 weeks were ok.
Back to square one and now offered methotrexate. Partner is understandably nervous about another drug, but I don’t see any other option?
I also feel that the diagnosis is a bit of a cop-out - seronegative arthritis just says ‘bloods are negative but he’s definitely swollen/sore’ rather than an actual cause? I would love to hear from anyone with this specific ’diagnosis’.
We are really concerned and feel that nobody else cares. It’s affecting his mental health and I’m so worried. He used to run marathons, hike and cycle and now he can hardly walk sometimes.
Thank you for reading my anxious brain dump xxx
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