I was diagnosed with Medically Induced Lupus but I don’t take any meds

UGH! Mayo wont take me without a "real PCP" AND an diagnosis. That baffled me. The reason I wanted to go to Mayo is because I cant seem to find a doctor familiar enough with what's going on with me to commit and verify a diagnosis and treatment plan. My Allergist is awesome and would give me the Rheumatologist referral but something on paper has to support the referral. I asked the him to run a Myositis panel including the specific anti-bodies for IMNM but he ran a basic panel which did not include the specific HMGCR antibody test so my panel was negative. I think the HMGCR is a send out. I also asked him to run a CK as that measures muscle damage and supports Rhabdomyolysis but the tech ordered a CK-MB which is specific to cardiac muscle damage and would not be elevated in Rhabdo. The CK peaks in about 24 hours and starts to decrease after that. By the time I figured out they ran the wrong test my levels were going down again.
So I gave up for now. I'm just taking prednisone to help control it and riding out the 3 month recovery period and hoping there are no more flare ups. Hurry up and wait UGH!

I got Covid in Feb 2020 so I've been dealing with all this for 2 1/2 years. Up until recently "Long Covid" was not a ICD diagnosis. My PCP was a condescending jerk about Long Covid. I had to stop relating anything to Covid with my provider. Focus on diagnosing the condition not the cause. When he sent me to the Allergist I used the same approach. These are my symptoms. I've had multiple other problems post covid. I seem to get a new symptom every 3-4 months. Tachycardia and Cardiac Arrhythmias, horrible GI issues for a while there, I rejected 2 permanent dental implants that had been stable for years, weakness, numbness and tingling in my extremities. I didnt lost my taste or smell, I constantly smelled bon fires then burning oil. There's more. Most resolved themselves but required medications to reduce symptoms. I was taking 15+ pills a day for a while. Now I'm down to 3. So yes separate medical conditions but I doubt I would have had any of them if I did not have covid. I've always been a healthy active person. It's possible the statin reaction may not have been as severe without the covid history.
IDK if its a weakened immune system from Covid but I do know there is a large incidence of auto-immune skin disorders diagnosed in Long Haulers. When I looked back at my past medical history I realized I had hives a lot as a child, pityriasis rosea as a teen, seborrheic dermatitis since I was 18 and a few other odd skin related diagnoses as an adult. Most likely I had an underlying auto-immune skin disorder that triggered mast cell issues post covid. Not true MCAS but Mast Cell related.

Thank you so much for sharing this information. I am having some anxiety around what this could mean for my health long-term. The most concerning, is that little is known, and there are still a large number of professionals that don’t even acknowledge post Covid syndrome. Good luck to you.