Lupus or another Autoimmune Disease?

[Milescircus]

I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work up to rule out Lupus by my PCP while awaiting a Rheumatologist.

I had multiple labs, ANA positive, dsDNA negative, Lipus Inhibitor negative , Anti CCP negative, ESR negative, RH factor negative, C3 and C4 Compliment negative, CRP negative, Cardiolipin IgA positive, IgG negative, and IgM positive. Smith Abs negative, CBC and CMP.

Can anyone by experience or knowledge help me to understand these? I mean I know what they are but how likely is a Lupus diagnosis with these results?

no immediate family history of Lupus but my moms half sister does have a diagnosis.

i suffer from excessive daytime sleepiness and fatigue to the point that I can’t function most days.

[Milescircus]

I’m sorry , positive ANA with Homogeneous pattern if that’s helpful at all.

[dg70]

I'm negative everything except had a positive dsdna, that alone got me a lupus diagnosis. I know they like positive inflammation along with symptoms usually. If you have more specific symptoms appear then see if you can get tested again. Sometimes it's a waiting game. We had a talk from a rheumatologist recently who does a lot of medical research, he reiterated there are people out there who would get a positive ana in the general population but have no autoimmune condition at all. Its about bloods along with specific symptoms. Keep a symptoms diary and pictures that may help.

[OldTed60 in reply to dg70]

With Lupus your anti dsDNA would most commonly be positive - with RA it would be anti CCP. I don’t see anti Ro or La there which in the States (where I think you’re from?) is often referred to as SSA and SSB, SS for Sjogren’s Syndrome. Some forms of inflammatory arthritis won’t show in any antibody tests eg psoriatic arthritis and Ankylosing Spondyloarthritis - I think because these are more often associated with hereditary rather than true autoimmune and are classed as auto inflammatory. So your mostly normal immunology test results and normal ESR and CRP would suggest that you may have one of the seronegative types of inflammatory arthritis or, more likely, Osteoarthritis. However in rheumatology is not a black and white science so it would be best to ask for MRI imaging of your spine to exclude a systemic/ inflammatory cause of your hip and joint pain.

Best wishes OT60

[Milescircus in reply to OldTed60]

Thank you for the info. I did not have anti Ro. LA? Lupus Antibodies? Yes. Negative. I may have left that off. I did have an MRI right hip which showed pelvis and partial left hip and I have partial tears to the Gluteus medius on both sides, complete tear of the left gluteus minimus on left side , partial thickness hamstring tears on both sides AND. A torn right labrum. No clue how this happened at all.. the MRI was ordered while waiting for the appt since I’ve had this pain for months. it did show some marrow edema and a possible strain. Mild degenerative changes in the spine. So this could maybe cause the inflammation? Would that possibly cause a positive ANA? And the cardiolipin abs that were positive have no idea. My PCP said she wondered if I had a connective tissue disorder as there was no injury/fall, etc. I will see the rheumatologist on Wednesday next week.

[OldTed60 in reply to Milescircus]

Sorry I missed cardiolipim antibodies but yes they should have included Ro and La antibodies I’d have thought - also no scleroderma or Myositis antibodies I can see but these are much rarer diseases - worth asking about though. Can’t help on torn meniscus or MSK antibodies although I do have similar pain periodically - lasts a few months then goes. Always used to show on my ESR and CRP but no longer so they blame severe osteoarthritis in lumbar and cervical spine. I have systemic sclerosis (antibody positive) and Sjogren’s (antibody negative) - also hypothyroid, Raynaud’s, severe GI dysmotility throughout inc Gastroparesis. Also HSD/ EDS - awaiting genetic testing for type.

[Milescircus in reply to Milescircus]

I did have an appt with the rheumatologist. He was very thorough. After the history and exam and lots of questions he came to believe for now anyway., that the positive ANA could be related to my Hashimotos. I had a tsh of 16 back in 2016 and elevated thyroid antibodies. I did have the Anticardiolipin abs redrawn and this time only one of the three remained positive. The IgM maybe? So I will follow up with him in March or sooner if need be. Are mouth sores a common problem for anyone here? I still have and chronic debilitating fatigue. Before we moved here (1 yr ago) I would NEVER have taken one nap much less want to sleep all day. Just frustrating.

[Brychni in reply to OldTed60]

Hi OldTedYou seem so knowledgeable I thought I'd ask a similar question

Initially, 4 years ago:

Antibeta2 glycoprotein 1 IgG *high* (confirmed 2 yrs later)

Synovial wrist scan, showed inflammation

Low platelets

Low white blood cells

Everything else normal.

Diagnosis was Undifferentiated inflammatory arthritis.

Hydroxychloroquine then methotrexate.

In the intervening years I dropped the MTX and last year (unbeknown to me )

acquired positive ANA.

Platelets have been consistently low.

Had hugh haemoglobin mch, now back to inside normal.

Yesterday discovered I have elevated immunoglobulin IgM.

Symptoms at the moment are both feet and ankles incredibly painful all the time, sometimes difficult to walk.

Less painful but an issue with both elbows.

A lot of pain head and neck.

The most concerning is the swollen fingers, purple spots and Raynaud's then recently digital ulcers.

Random petechiae.

There are other things which I'm not sure are related but that are worrying but I've had for a long time and haven't killed me so I try to ignore them!

[OldTed60 in reply to Brychni]

I’m sorry but I’m not that knowledgeable as don’t have inflammatory arthritis these days. I only know what I know having been misdiagnosed done years ago with RA - mostly affecting hands and feet but also connective tissue ie tendons and ligaments. Nowadays I know more about scleroderma antibodies and a little about myositis but nothing much about lupus ones or close relatives about from Sjogren’s - which only has two so relatively straightforward same as RA.

[Milescircus in reply to OldTed60]

I did have an xray lumbar spine which led to an MRI lumbar spine.. I have a bulging disk at L4-L5. I’ve had 2 epidural into that area, only 50% relief and yesterday a diagnostic only injection into my right hip. So… we will see.

[MusicalFurbaby]

Hi Milescircus, I also have positive anti-cardiolipins (it means you’re prone to blood clots) but I also have a positive dsDNA, which is a bit of a lupus confirmation. Positive ANA can mean lots of things, including various autoimmune stuff.

I would echo what others have said and suggest retesting—which they need to do anyway to confirm a diagnosis—and see what else comes up positive over time, or if these results change. Bloods are not definitive either—your bloods can appear normal, even during a horrible illness flare! That’s why retesting is the gold standard. Good luck with it, and feel free to post here anytime 🌻🌈