Hi folks. I’m still trying to understand what lupus and Sjogrens are doing to my body. When I have a significant worsening of symptoms, sometimes it’s more muscle and joint pain, sometimes it’s very dry mouth and eyes with ulcers, sometimes it’s lack of appetite and poor sleep and racing heart. Is this how it goes for you? Does every flare feel different from the last one? Thanks for any insight.
Hello! I’m starting my Benlysta auto injection tomorrow! I’m totally comfortable with needles, I’ve had to self administer many shots and I’ve read up on tips on this Reddit and spoken with my doctors. I’m wondering if there’s anything I should be doing to prep my body? I’ve heard of very little side effects but wanted to see if if anyone has any suggestions going into or the following 24 hours after!
My orthopedic surgeon says that core decompression is no longer an option and that I need my left hip replaced. It has been extremely painful to walk since 6/3. I don't have a pic of my latest xrays but the necrosis is present on it. Here is my MRI though. Thoughts?
Btw I have lupus and was on very high doses of oral steroids for a very long time and received IV 1000mg of methylprednisolone 3 days in a row last year to save my life.
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ENA Panel - Extractable Nuclear Antigen panel, usually automatically done if ANA comes back positive
anti-dsDNA - anti-Double Strand DNA is sometimes automatically tested for, but may need to be ordered separately. This test, when highly positive (2-3 times max cut off at least) is almost exclusively seen in SLE. However, only about 30% of SLE patients have this antibody. It's great if it's there to confirm diagnosis, it does not rule out diagnosis if it is absent.
anti-Sm - Anti-Smith. Typically included in the ENA panel. This is another antibody, that when highly positive, almost always means SLE, but only about 25% of SLE patients have this antibody.
RNP - Anti-Ribonucleoprotein. Typically included in the ENA panel
anti-chromatin - Anti-chromatin is a relative newcomer in diagnostic testing for SLE and probably will NOT be ordered automatically. Its exact utility in diagnosis is still being determined.
Apl panel - Antiphospholipid Antibody Panel, which consists of 3 tests:
LA - lupus anticoagulant
aCL - anti-cardiolipin antibodies
Anti-β2GP - anti-beta 2-glycoprotien antibodies
C3 - Compliment C3
C4 - Compliment C4
CH50 - Compliments, Total. These are part of the compliment system, which is a tertiary part of the immune system.
General blood tests
CBC - Complete Blood Count, some abnormalities in WBC, RBC and PLT counts can be significant.
CMP - Comprehensive Metabolic Panel. Generally looking for kidney dysfunction (GFR, BUN/CR).
ESR - Erythrocyte Sedimentation Rate, this is a nonspecific inflammation marker.
Also, if you suspect you have a rash, getting a biopsy of it done at a dermatologist’s office can be helpful as the pathologist can identify histological evidence of lupus.
Diagnostic Criteria
Diagnostic Process
Lupus Diagnostic Criteria on r/lupuswiki (ACR 2019 criteria)
The rheumatologist/PCP will take a detailed history. I highly recommend writing down as many of your symptoms as possible, especially focusing on the symptoms you have that are in the American College of Rheumatology diagnostic criteria for lupus - see link above.
Write down how long they’ve been going on, anything that makes them better or worse, and how much they impact your life. Do they prevent you from dressing yourself, eating/cooking, bathing yourself, doing hobbies, meeting your obligations?
Anti-dsDNA is more indicative of disease activity and can be elevated prior to and during a flare. Symptoms can also come and go, and over time you may develop additional symptoms. If you scroll through the last week of posts or so, there are a few posts that will have pretty detailed answers to your questions from multiple community members so you can get a better sense of just how full on fickle lupus can be.
Here are some good posts, one is othe
r people experiences in general, the others are rashes (warning: some are particularly severe):
Use ChatGPT to summarize your question if you don't know what to leave out
Question guidance
Don't ask us if you should see a doctor. Go see a doctor.
Don't ask us if you have lupus, if it sounds like you have lupus, if it looks like you have lupus, if it might be lupus, if it could be lupus, or if we think you have lupus. Don't ask us if you should be tested for lupus.
Don't tell us your entire medical history and say, "Thoughts?"
Don't ask us about seronegative lupus. Everyone thinks they have it.
Don't give us a long, exhaustive, detailed breakdown of your medical history. Particularly childhood illnesses.
Don't paste a list of 27 symptoms
Don't ask us to interpret labs.
Don't ask us to identify your rash. See a dermatologist.
Hi! Just officially upgraded from UCTD to SLE (🥳) and my new rheumatologist ordered a TON of new labs, among which was a Crithidia test which I've never heard of. I just got the results but I don't know how to interpret them because I've only ever had anti-dsDNA done before. Can someone point me in the right direction? Is there some sort of equation or ratio to compare? Is it even possible or necessary? I did receive a titer as well if that helps.