I have been diagnosed with lupus. However, I am questioning the diagnosis. Initial presentation of ITP (platelet count under 10k) minor loss of kidney function. Underwent biopsy and reported to have glomerulonephritis prominent mesangial deposits. In addition, three false syphilis positives. Failed hospital treatments (IVIG, Dexamethasone, Rituxan) and underwent splenectomy. I had a heart attack (Troponin 60), positive thyroperoxidase antibody, multiple years positive lupus anticoagulant, positive beta-2 glycoprotein (IgG, IgM), and positive anticardiolipin (IgG, IgM, IgA). I have never been positive for the Rh factor. My C4 complement is borderline low, and sometimes low C3 as well. Current stage 4 CKD (BUN:40, creatinine-3.04, GFR:18). According to my doctors, the literature indicates SLE. However, given the newest criteria for a diagnosis provided by the NIH, due to the lack of positive ANA, I do not fit the category. Having read on the internet, glomerulonephritis, and thyroid disease, would produce the same symptoms. Given the above information, hypothetically, what further information would disprove an SLE diagnosis from a physician's perspective? Or is a coexistence of these factors likely?
I am a 26-year-old male. I quit frequent hookah smoking after a heart attack and no alcohol habit. Sometimes I have a fever, muscle/nerve pain, fatigue, alopecia, nausea, abdominal pain, brain fog, and weight gain.
I am currently on Carvedilol, Eliquis, Acetaminophen, Clonidine, Hydralazine, Hydroxychloroquine, Azathioprine, Atorvastatin, and Aspirin.
I understand that the information given does not imply treatment. Having read how many autoimmune diseases have overlapping symptoms, I am looking for a professional opinion.
Welcome to icliniq.com.
Is your concern that it is SLE or not SLE only? The treatment is more important. It is an autoimmune process that has affected different organ systems. According to me, the concern should be how to halt the progress of the illness, for which knowing if it is purely SLE or not is more of a prognostic implication rather than therapeutic. Thyroid antibodies can be positive with any autoimmune process. Even there could be an underlying vasculitis and CKD, which all could have led to the heart's involvement as well.
According to me, what is more important is to focus on symptoms. Are you symptomatic? What is the inflammation score in terms of CRP, ESR, complement levels, and if high, take immunosuppressants and steroids? Take care of the kidney status. Check a thyroid function test if it is deranged and then move to a deeper level of healing with a more disciplined approach, integrate meditation, diet, a physical routine, and mindfulness. Fix your gut, and mental-emotional state, rest will gradually fall in place.
I hope this helps.
Thank you doctor,
My concerns are without the positive ANA, DNA. Can it still be called SLE? I would agree that the name is typically irrelevant, except that in my case, my physicians are hesitant in their own words to add any more medication due to the ones I am currently taking.
In terms of thyroid antibodies, I am confused. Does that mean that they can hypothetically be a false positive/asymptomatic? How then would you define someone with secondary if they had another autoimmune disease?
Welcome back to icliniq.com.
They have diagnosed you with lupus. Lupus is a broad category in which SLE (systemic lpus erythematosus) can be included, but lupus does not mean SLE. Generally, ANA (antinuclear antibodies) has to be positive. Seeing if you are in remission or relapse will help formulate a treatment plan. Thyroid antibodies do not require treatment in itself. It is the thyroid function status that guides the treatment plan.
CRP is a C-reactive protein. It tells about the inflammation status in the body. Follow a diet that includes more veggies and fruits, practice intermittent fasting 16:8. Do moderate-intensity workout or walk two miles daily, practice tai chi or qi gong, and mindfulness techniques. You can check out Eckhart Tolle's meditations for that it will be a great help.
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