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

Posted by shorey93 @shorey93, Aug 24 9:39am

So my primary ran some blood tests for me after some inflammation and pain in my left and right wrist hadn’t improved in three months. The test came back low positive for ANA, negative less than 1 for DS DNA antibodies and a strong positive of 3.1 for histone antibodies. This made my primary think I could have medically induced lupus but I haven’t taken any medication for longer than a week in years and any medication I have taken recently I started after the pain and inflammation began and I stopped it once my COVID symptoms went away. Has anyone had this happen before and can share their experience?

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Hi @shorey93, your primary care physician would know that you are not taking any medications, right? Drug-induced lupus typically comes after many months or years of continuous therapy with the causative drug.
Here's more information with a list of medications:
– Medications that can cause drug-induced lupus https://www.lupus.org/resources/medications-that-can-cause-drug-induced-lupus

Did your doctor consider that the infection may have stimulated an autoimmune response? Did you have an autoimmune diagnosis before Covid?

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@colleenyoung

Hi @shorey93, your primary care physician would know that you are not taking any medications, right? Drug-induced lupus typically comes after many months or years of continuous therapy with the causative drug.
Here's more information with a list of medications:
– Medications that can cause drug-induced lupus https://www.lupus.org/resources/medications-that-can-cause-drug-induced-lupus

Did your doctor consider that the infection may have stimulated an autoimmune response? Did you have an autoimmune diagnosis before Covid?

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Hey Colleen,

Thank you for the resource. I’ll make sure to take a look. My doctor does know that I’m not taking any medication, however, I’m not sure if he considered an autoimmune response to COVID. I’ve never had an autoimmune diagnosis before testing positive for COVID. I did start experiencing the pain in my left wrist two weeks before I started experiencing COVID symptoms though so that might be why he didn’t suggest it. I’m not sure. He’s sending a referral to a rheumatologist so I can get a more specialized opinion.

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How does the covid infection relate to your symptoms? Did your symptoms start before, during, or after having covid?
I haven't had your experience, but read last week that there now believed to be a viral cause of MS– so it's not surprising, given the inflammatory nature of covid, that your immune system can go haywire

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I contracted Covid four months ago. Since then it’s been one strange thing after another. Most recently I broke out in a rash all over my body. With my doctor away I went to the ER. They were very quick to say it was Lyme. I’m not convinced. they seemed to be basing that diagnosis on the fact that I had a fever followed by a rash. However, I also had cough, scratchy throat, muscle aches and pains, a very painful spine, abdominal pain, increased heart rate, dizziness etc… In fact every single one of my Covid symptoms accompanied the fever and rash. I think I’m having an auto immune response to Covid. I guess I’ll know for sure when the blood work comes back. Any thoughts?

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@nancyoinnc

How does the covid infection relate to your symptoms? Did your symptoms start before, during, or after having covid?
I haven't had your experience, but read last week that there now believed to be a viral cause of MS– so it's not surprising, given the inflammatory nature of covid, that your immune system can go haywire

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The inflammation and pain in my left wrist started two weeks before I had any issues with COVID. Originally I thought the pain was due to overuse and a workout related injury since I do a lot of typing for work/pleasure and the pain started after a workout at the gym. However the strong positive levels of histone antibodies present in my blood made myself and my doctor more uncertain that the workout/overuse was the cause.

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We are complicated creatures!! Good luck with learning more.

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I have similar issues with Joint/Muscle Pain but with different variables. I had Covid in Feb 2020 (2 and a half years ago) and had symptoms all over the board including intermittent muscle/joint pain. Finally in August 2021 My PCP referred me to an Allergist. He immediately identified my constant flushing and heat intolerance to underlying hives with mast cell involvement and started me on Xolair shots. In looking back at my past medical history I probably always had an underlying auto-immune shin disorder. The hives resolved with the Xolair but I did not respond as expected. I continued to have debilitating symptoms that finally indicated Kidney Failure in my labs (GFR 14). By a fluke I had stopped my Lipitor (STATIN) a few weeks before we re-ran my labs and my labs improved by double. So, in retrospect, my PCP (who resigned as my doctor the same day my labs showed AKF) started me on Lipitor in June 2021. He ignored my symptoms and repeatedly turfed me to the Allergist. I was diagnosed with Rhabdomyolysis by the Nephrologist. None of the Physicians seem to know much about Rhabdo. It causes severe joint and muscle pain and should resolve around 3 months after you stop taking the Statins. Instead, about 2 weeks in the joint and muscle pain went from occasional/intermittent to constant excruciating pain. I'm 8 weeks post stopping the statins and it's starting to subside a little now, but along with it I also have significant Angioedema in my shoulders, neck and face. This started Dec 2021 and was probably related to the Statins too.
Here's where I have questions no one can answer. Why would the muscle pain get worse? At this point I have to also question the possibility of IMNM (Immune-Mediated Necrotizing Myopathy) which is also caused by statins but unlike Rhabdo is auto-immune. This could change the recovery from 3 months to life-long. This is where I question of Covid's impact on our immune system could have triggered this as well. Considering Covid most likely triggered the skin disorder it seems likely it could also cause a Myositis disorder.
I asked the Allergist to run a Myositis panel including the specific anti-bodies but he ran a basic panel which did not include the specific HMGCR antibody test so my panel was negative.
So now I'm stuck. No referral to a Rheumatologist. I have to sit in bed for possibly another month to identify that the Rhabdo is/is not resolving. I tried Mayo but my POS PCP resigned and Mayo wont take me without a PCP. It takes 3 months to get a New Patient appointment for a "half-decent" PCP that may have knowledge of my illness. I have to basically start over. The sad thing is treatment is Prednisone and I could return to a fairly normal life. So simple. But someone has to take responsibility and diagnose and prescribe.

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@sandyviolet

I contracted Covid four months ago. Since then it’s been one strange thing after another. Most recently I broke out in a rash all over my body. With my doctor away I went to the ER. They were very quick to say it was Lyme. I’m not convinced. they seemed to be basing that diagnosis on the fact that I had a fever followed by a rash. However, I also had cough, scratchy throat, muscle aches and pains, a very painful spine, abdominal pain, increased heart rate, dizziness etc… In fact every single one of my Covid symptoms accompanied the fever and rash. I think I’m having an auto immune response to Covid. I guess I’ll know for sure when the blood work comes back. Any thoughts?

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Auto-immune skin disorders seem to be very common with long covid. Don't be too surprised if your labs don't return anything that supports a diagnosis. Mine didn't. I was experiencing frequent flushes on my chest neck and face and intermittent rashes. I would flush so red I looked sunburned 15 times a day. My allergist pegged it really fast during my physical exam. The flushing was actually underlying hives. He diagnosed it as Hives with Mast Cell involvement.
He started me on Xolair allergy shots. It took a few months to get the levels high enough to get ahead of the inflammation. After that it knocked out a lot of my Long covid symptoms. Unfortunately the Statin reaction symptoms over lapped and we assumed Long Covid was causing more issues. Now that we have it all untangled hopefully the Statin reaction will slowly resolve.

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Are you saying it was a separate condition? Perhaps even brought on by a weakened autoimmune system from having Long Covid?

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@kasb

I have similar issues with Joint/Muscle Pain but with different variables. I had Covid in Feb 2020 (2 and a half years ago) and had symptoms all over the board including intermittent muscle/joint pain. Finally in August 2021 My PCP referred me to an Allergist. He immediately identified my constant flushing and heat intolerance to underlying hives with mast cell involvement and started me on Xolair shots. In looking back at my past medical history I probably always had an underlying auto-immune shin disorder. The hives resolved with the Xolair but I did not respond as expected. I continued to have debilitating symptoms that finally indicated Kidney Failure in my labs (GFR 14). By a fluke I had stopped my Lipitor (STATIN) a few weeks before we re-ran my labs and my labs improved by double. So, in retrospect, my PCP (who resigned as my doctor the same day my labs showed AKF) started me on Lipitor in June 2021. He ignored my symptoms and repeatedly turfed me to the Allergist. I was diagnosed with Rhabdomyolysis by the Nephrologist. None of the Physicians seem to know much about Rhabdo. It causes severe joint and muscle pain and should resolve around 3 months after you stop taking the Statins. Instead, about 2 weeks in the joint and muscle pain went from occasional/intermittent to constant excruciating pain. I'm 8 weeks post stopping the statins and it's starting to subside a little now, but along with it I also have significant Angioedema in my shoulders, neck and face. This started Dec 2021 and was probably related to the Statins too.
Here's where I have questions no one can answer. Why would the muscle pain get worse? At this point I have to also question the possibility of IMNM (Immune-Mediated Necrotizing Myopathy) which is also caused by statins but unlike Rhabdo is auto-immune. This could change the recovery from 3 months to life-long. This is where I question of Covid's impact on our immune system could have triggered this as well. Considering Covid most likely triggered the skin disorder it seems likely it could also cause a Myositis disorder.
I asked the Allergist to run a Myositis panel including the specific anti-bodies but he ran a basic panel which did not include the specific HMGCR antibody test so my panel was negative.
So now I'm stuck. No referral to a Rheumatologist. I have to sit in bed for possibly another month to identify that the Rhabdo is/is not resolving. I tried Mayo but my POS PCP resigned and Mayo wont take me without a PCP. It takes 3 months to get a New Patient appointment for a "half-decent" PCP that may have knowledge of my illness. I have to basically start over. The sad thing is treatment is Prednisone and I could return to a fairly normal life. So simple. But someone has to take responsibility and diagnose and prescribe.

Jump to this post

You could possibly get around that wait time if you have a walk-in clinic near by and presented, in pain, and with all of your info and get that referral to a rheumatologist from them and then on to Mayo?

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@t2swim09

You could possibly get around that wait time if you have a walk-in clinic near by and presented, in pain, and with all of your info and get that referral to a rheumatologist from them and then on to Mayo?

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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!

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@sandyviolet

Are you saying it was a separate condition? Perhaps even brought on by a weakened autoimmune system from having Long Covid?

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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.

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