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Surgery caused autoimmune disease or Drug Induced Lupus

Posted by fox940 @fox940, Nov 27, 2017

Hi, new here. I have been referred to the Mayo Clinic in Rochester in an attempt to get a diagnosis. Should hopefully have an appt. soon. I thought I would make this post in hopes that someone else might be suffering from something similar, or someone may have an idea. I have suffered from food allergies for several years and have to follow a strict diet. I also have been diagnosed with Drug Induced Lupus six years ago. I had been on Nexium for a couple years and began to experience severe joint and muscle pain with hair loss on my lower legs from the inflammation. My Anti-histone AB test was ultimately a 6.2 and anything over a 0 to 0.9 is positive. I discontinued the medicine and slowly my symptoms improved but found that certain meds like other acid reducers, anti-histamines, and antibiotics would flare my symptoms up. I would also commonly wake up in the morning with leg pain, but it would always go away as I got up and moved around. In April of this year I had to have my GB removed as it has stopped working (no stones). In May I was recovering and starting to feel well when I developed severe insomnia and then severe joint/muscle pain and cognitive impairment along with muscle weakness. I also lost more hair on my lower legs. It was suspected that I was having an autoimmune/allergic reaction to the titanium clips used during the surgery and on July 3 I went into surgery and the metal clips were removed and one polymer clip had to be used as my artery was leaking. The worst of the symptoms have went away, but I am still suffering from muscle pain in my feet/lower legs/thighs, pelvic floor/ arms/shoulders/ and hands. The upper body pain seems to come when my symptoms are the worst, always have the lower body pain. In June I did test positive for the Anti-histone AB at a 3.3. In August it was a 4.4 and it was a 3.7 a month ago. I also had a weak positive ANA in August with homogeneous pattern. Even though I am testing positive for Drug Induced Lupus my Dr. doesn't think this is Drug Induced Lupus as the symptoms should go away in 3 to 6 months, though I have read it can take a year or more. Since July the only meds I take are a Benadryl every 10 days when I get my allergy shots and Tylenol when needed for other pain. Other than that I am taking a Multi-vitamin, fish oil, probiotic, and Quercetin. If I discontinue the Quercetin my symptoms seem to worsen, it is a natural anti-inflammatory. I'm starting to wonder if my surgery triggered an autoimmune disease or maybe I have a rare case of Drug Induced Lupus. I'm not for sure what has triggered the strong positive Anti-Histone AB tests, i suspect it was the antibiotics used during the surgeries and I was also on Ciproflaxin a couple years ago for a prostate infection after vasectomy and I have read it can cause drug induced lupus. Anyone ever hear or experience something similar?

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mrlncrvn | @mrlncrvn | May 7, 2018

Im glad Diovan (valsartan) is working for you. I had a lupus flare while on the ARBs. I'm frustrated and feel I'm running out of options.

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Kelly, Alumna Mentor | @kdubois | May 7, 2018
In reply to @mrlncrvn "I was diagnosed by a rheumatologist in November with drug-induced lupus and raynauds due to chlorthalidone..." + (show)
@mrlncrvn

I was diagnosed by a rheumatologist in November with drug-induced lupus and raynauds due to chlorthalidone and possibly lisinopril, which was discontinued. Since then, I have reacted to other antihypertensives, i.e., ARBs, ACES, calcium channel blockers, loop diuretics. Within 3-4 weeks of taking the new bp medications, I have painful flare-ups and have to stop taking them. I'm in my 2nd week of starting a new drug. I hope and pray there is no flare-up. My doctor is referring me to a nephrologist after I get a renal U/S and doppler flow. My kidney functions in October were normal. I think my doctor is just as frustrated as I am. We're running out of options with the antihypertensives. I'd appreciate any input and suggestions.

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@mrlncrvn have you always reacted to medications so quickly? Have you ever had strange reactions to other medications in the past or talon meds that didn't work, as well?

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mrlncrvn | @mrlncrvn | May 7, 2018
In reply to @mrlncrvn "I was diagnosed by a rheumatologist in November with drug-induced lupus and raynauds due to chlorthalidone..." + (show)
@mrlncrvn

I was diagnosed by a rheumatologist in November with drug-induced lupus and raynauds due to chlorthalidone and possibly lisinopril, which was discontinued. Since then, I have reacted to other antihypertensives, i.e., ARBs, ACES, calcium channel blockers, loop diuretics. Within 3-4 weeks of taking the new bp medications, I have painful flare-ups and have to stop taking them. I'm in my 2nd week of starting a new drug. I hope and pray there is no flare-up. My doctor is referring me to a nephrologist after I get a renal U/S and doppler flow. My kidney functions in October were normal. I think my doctor is just as frustrated as I am. We're running out of options with the antihypertensives. I'd appreciate any input and suggestions.

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I've had a mild rash to amoxicillin and have latex sensitivity from wearing gloves at work. Other than that, everything has been fine until the drug-induced lupus. Thanks for asking!

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trisha123 | @trisha123 | Mar 1, 2019
In reply to @fox940 "What's crazy is I look like I should be the picture of health. My tests are..." + (show)
@fox940

What's crazy is I look like I should be the picture of health. My tests are outstanding besides the positive Anti-Histone AB. My inflammatory markers are normal and all other blood work is normal. I don't have the skin conditions some with regular lupus have. I also don't suffer from chronic fatigue like some. I had a blood metal allergy test done in August after having the metal clips surgically removed and the tests were negative so it may not have been the metal clips causing my issues though my joint pain and muscle weakness improved. I just suffer from the severe muscle/bone pain now. I do have what I call "lupus attacks" where a day or two every 4 weeks or so I do suffer from fatigue and worse pain than usual. When this got real bad around June 1 that is what I thought was happening, but besides the fatigue it hasn't went away like it would before I had surgery. When I am having a "flare" where the pain is worse than normal I get fatigued, but I'm pretty sure it is just being wore out from the chronic pain. I'm 6'3" and 185 pounds and am in good shape. Looking at me from the outside I look like a very healthy person and in great shape for my age. I have to eat a strict diet due to my food allergies so I have to eat healthy. I pretty much follow the Auto-immune Paleo diet. I keep my sugar consumption very low as well as avoid processed foods, etc. I've read that Autoimmune Disease is an Invisible Illness and that makes a lot of sense. I am close to Denver and the medical community in this region of the US doesn't seem to know what is wrong with me. I go to a Dr. that is within a large network of hospitals up and down the front range of Colorado. I've been going to a PT that specializes in Pelvic Floor Physical Therapy and that has helped that region of the pain, but when I flare it seems like any gain is reversed back to where I suffer from the pain. Hopefully the physicians at the Mayo Clinic can give me an answer though I'm starting think I'm an anomaly.

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Hello @fox940
Can you tell me where you had the blood tested for metal? We can't seem to find a place that tests the metal in dental implants? Including titanium.
I hope you're feeling better by now, do you have a diagnosis.

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2 replies
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 1, 2019
In reply to @trisha123 "Hello @fox940 Can you tell me where you had the blood tested for metal? We can't..." + (show)
@trisha123

Hello @fox940
Can you tell me where you had the blood tested for metal? We can't seem to find a place that tests the metal in dental implants? Including titanium.
I hope you're feeling better by now, do you have a diagnosis.

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@trisha123 There is a lab in Chicago that tests for immune responses to implant materials. It's probably not covered in network by insurance, but here's the link. I had some testing done there. https://www.orthopedicanalysis.com/

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gbny1224 | @gbny1224 | Jun 6, 2022
In reply to @trisha123 "Hello @fox940 Can you tell me where you had the blood tested for metal? We can't..." + (show)
@trisha123

Hello @fox940
Can you tell me where you had the blood tested for metal? We can't seem to find a place that tests the metal in dental implants? Including titanium.
I hope you're feeling better by now, do you have a diagnosis.

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Ccrlab.com go thru betterlabsnow.com to order the kit its 425.00 it test for anti bodies that are related to various materials. I'm waiting for my kit now. It's a different method from the others.

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1 reply
gbny1224 | @gbny1224 | Nov 5, 2022
In reply to @gbny1224 "Ccrlab.com go thru betterlabsnow.com to order the kit its 425.00 it test for anti bodies that..." + (show)
@gbny1224

Ccrlab.com go thru betterlabsnow.com to order the kit its 425.00 it test for anti bodies that are related to various materials. I'm waiting for my kit now. It's a different method from the others.

Jump to this post

My ccrlab showed nothing orthopedic analysis showed 22.7 for Ni

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