Still waiting for my first Rheumatology appointment. 4 weeks to go and I'm still signed off work (week 4). My doc did my ESR levels again last week as I'm testing negative for RF and Anti-CCP and my symptoms were quite bad. My ESR has been going up and down so much. It is now 39 which is the lowest it has been for a while and my swelling is slightly improved. Will the rheumatologist still be able to diagnose something if my ESR is lower and symptoms slightly improving. I'm really worried that I won't get a proper diagnosis. I have photos of my swelling and skin inflammation also a list of my symptoms. Has anyone else experienced this? 

2 Replies

  • It's not easy to suggest anything until you have a firm diagnosis but inflammation levels can rise & fall even when diagnosed & on specialist meds. It may be that you've had what's called a flare & you're now recovering from that which would make sense as your levels are falling. Also your swelling's improved so that would follow. Unless you've been taking a prescribed or bought over the counter anti inflammatory (NSAID) or pain relief & that's been effective at bringing the inflammation down? If this is the case it's why it's a good idea to stop taking anything for a few days before your first Rheumy appointment, my GP suggested I did this so an accurate diagnosis could be made & suitable doses/treatment prescribed.

    I'm afraid I didn't have enough time to experience fluctuating inflammation levels. I was fortunate, I was diagnosed & started treatment 15 days after my GP had the test results back. 

  • Ive never had raised ESR levels but was diagnosed by the fact that I had pain and significant synovitis in several joints. I have PsA. Clemmie

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