Is it Lupus?

[Milescircus]

I’ve suffered from knee, bilateral hip, and ankle pain for a few years. Lately the hip pain radiates laterally down my leg to my ankles. Sometimes it takes me a few to be able to walk when I wake up. I have had the full Lupus Work up by labs. A year ago. I have positive ANA and 2/3 positive Anticardiolipin labs, I had my original appt with the rheumatologist and he believed the ANA could be hasimotos. I had high antibodies back in 2016. I have had a diagnosis of excessive daytime sleepiness since 2005.. I have sleep apnea and don’t use the bipap, so all along it’s been said my debilitating fatigue is because I don’t use it. We move a lot, and when we moved to NC things just went south. Absolute debilitating fatigue, I can’t even function in my life, can’t do the things I want to do. I do have iron deficiency anemia, intestinal Metaplasia and autoimmune atrophic chronic gastritis therefore the iron and b 12 deficiencies. I have had other diagnoses like bilateral lung nodules, abnormal labs, etc and when I compare each online, for example, searching intestinal metaplasia and lupus, lung nodules and lupus, and the rest, it shows that each of them can come with lupus. I know it’s a long process being diagnosed but I have all the diagnoses that could help make the diagnosis. I’m on hydroxychloroquine now, and I have a follow up appt soon with the rheumatologist. I feel like this is what I have. I also have an aunt with Lupus but no other relatives that I’m aware of. My sister has many of the same symptoms. I do have faint malar rash but not all the time. Just looking for advice, anyone agree or strongly disagree?

[lupus-support1 Administrator]

Welcome!

SLE is difficult to diagnose unless someone has a malar rash, positive ANA & lupus nephritis. There’s about 25% of lupus patients with a malar rash. It’s a very precise rash that doesn’t cross the folds of the face.

SLE is called, “A disease of a 1000 Faces” because it can mirror almost every medical condition. It’s hard to diagnose and some rheumatologists have never seen a patient with lupus.

SLE is clinically diagnosed over a period of observation ie time. I was diagnosed with SLE after 18 months of observation by Prof Graham RV Hughes, one of the world’s experts in SLE at St Thomas Hospital, London. I remembering him saying that it’s more important to treat the symptoms of distressed patients than the diagnostic label.

My advice to you would be this: find an expert rheumatologist in autoimmune diseases and get the treatment you need and deserve. Apart from “SLE”, there are lupus variant conditions and have different names. But, names aren’t more important than getting the treatment you deserve.

I don’t know where you live, but I think it’s the US. The Lupus Foundation of America is a good source of information including support groups near to where you live.

With good wishes,

Ros