high amyloid??

[Agt12]

Hiya, hope everyone is doing well!

I have for the last 2 years had a lot of symptoms that fit lupus ones…joint pain, photosensitive rashes, mouth ulcers hair loss low grade fevers etc. my bloods have all coke back normal/negative including ANA and deDNA and nornal CRP with only mildly raised ESR. I have a weakly positive lupus anticoagulant antibody. I was left pretty much without any treatment other than ohysio for hypermobility related problems as my rheumatologist seems to think there’s nothing inflammatory to treat

Recently I was in extreme pain and ended up in hospital for a week, during which time my bloods were done again. I had a lot of fevers without even feeling like I did. They did swabs and bloods-all came back negative so no infection. CRP was nornally again and ESR and white cell count a bit raised. Lupus anticoagulant positive again. The only other thing was a high anykoid level of 124. I don’t have units or anything all I can find is it should be <3 but not sure if this is same measurement?

I was wondering if anyone had a similar experience or any advice on what the high amyloid could mean? I have been given colchicine to try with pain relief until I see rheumatologist but would appreciate any help as she has dismissed me before.

[KayHimm]

Hi Agt-12,

You sound very similar to me. Before some of the newer antibody levels were available, my only positive tests were a biologic false positive VDRL - in that same category as your lupus coagulant - and ESR with mild anemia. Like you, I had fevers and other symptoms.

I am not familiar with the amyloid test but it sounds like a newer test for inflammation in rheumatic disease. Your doctors seem to be doing everything to diagnose you.

Have they mentioned the possibility of lupus to you? You might want to read the discussion on lupus spectrum disorder from yesterday. Thinking it would help you to formulate questions for the rheumatologist.

My ANA did become positive after about five years. But I was actually diagnosed with UCTD well before after a sun-induced rash.

Very hard to be in limbo. Hope you get clarity soon.

K