Lupas or Aps

[Scottc]

Hey everybody. I was diagnosed with primary Aps but when I look up Lupas and Aps. I have most of the sign of Lupas and Aps Is there a chart that has the symptoms separated or could it be another immune disorder.

[Jolevans]

Hi Scotty,

I also get very confused as the symptoms and treatment seem the same.

Initially I had a test which showed I had Lupus then saw professor Hughes whom said I had Hughes Syndrome. I was then treated for APS.

But on the letters that my GP receives it says Lupus.

I just now say Lupus when people ask what my condition is as that is more well known.

[MaryF Administrator]

Hi, Prof Hughes often describes these diseases as cousins of each other, lots of us have overlapping symptoms, plus other autoimmune diseases as well. It is important during investigations to have your Thyroid tested, plus levels of your vitamin D, B12, Folate and Ferritin looked at. MaryF

[lupus-support1 Administrator]

SLE is difficult to diagnose. One of the tests for APS is called the Lupus Anticoagulant but this is NOT a test for SLE but a complicated clotting test.

Some patients with SLE also have APS as a secondary autoimmune condition. It’s not uncommon to have more than one autoimmune condition.

My advice is to have a good rheumatologist who is an expert in APS & SLE.

If you look up symptoms you can convince yourself that you have that disease rather like medical students imagine they have all kinds of diseases!

Concentrate on understanding APS and talk to your specialist rather than trawl the internet. Here is a good source of help.

With good wishes,

Ros

[Scottc in reply to lupus-support1]

I had these symptoms before I was diagnosed. I had a history of fractures and a vascular nercrosis. Then I got a virus in 2015 and couldn’t get over it, ran fever for 6 months plus chest pains, brain fog( couldn’t remember anything and couldn’t function or think), swelling in my liver and stomach, fingernail started failing off, cold sweats, migraines, back pain, rashes on arm, neck, extreme fatigue, numbness in my arms and sometimes my legs. Also just seemed like I hurt everywhere and tried pain medication but didn’t really help. They started me on plaquenil which broke the fever, rashes went away. 3 months later started on warfarin which helped better with the pain than pain meds. I used to get these knots in my back which I thought was from an old fractured vertebrae but knots went away when my INR is above 3.5. I still have the brain fog, fatigue, swelling in my stomach and pain and these flares. I feel better the higher my INR and pain meds helps when my blood is above 3.5 but if it drops below 2.3 I hurt bad and nothing helps. Also they don’t prescribe pain meds anymore so that not a option. When my blood thinner than it supposed to be I feel a lot better but the dr worries about a bleeding risk but you can cut me and I don’t bleed. I sometime wonder if I’m just going nuts. I have checked my thyroid, b, and d. I wonder if I do have Lupus or something I don’t know about besides just having Hughes

[lupus-support1 Administrator]

If you are concerned ask for a referral to see a lupus specialist eg Dr David D’Cruz at St Thomas’ Lupus Clinic.

With good wishes,

Ros