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Surgery caused autoimmune disease or Drug Induced Lupus
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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I also forgot to add that I am a 43 year old male. I was tested for Lyme disease as well as it fit my symptoms, but the test came back negative. I am very sensitive to medicines in general and supplements as well. I have tried different supplements and anything that can stimulate the immune system makes me ill with the joint/muscle/bone pain.
Hello @fox940, welcome to Mayo Connect. I'm tagging one of our Connect mentors Kelly @kdubois who has mentioned drug induced lupus. She provided some great information in her post here:
https://connect.mayoclinic.org/comment/56979/bookmark/?ajax_hook=action&_wpnonce=c2ac13cbbe
John
Hi @fox940, I suffered for a year from drug-induced lupus. My pharmacist was the one who figured it out because he took the time to read the full-length medication documentation from the manufacturer. What was interesting was that the words "autoimmune" and "drug induced lupus" weren't even in the documentation. It only said a brief paragraph stating that some patients develop "antibodies" to the medication.
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2 ReactionsThanks for the information. I read it and unfortunately besides the comments about Drug Induced Lupus don't seem to fit me very well.
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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3 Reactions@kdubois How long did it take you to recover from DIL after stopping the medication?
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1 ReactionI would say that it took as long as two months for it to leave my system, but it was a medication that required monthly shots. Slowly-but-surely, I did feel better though.
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1 ReactionThanks for the reply Kelly. I am going on 6 months of being in constant pain with it not seeming to really improve. My first bout of Drug Induced Lupus the pain improved after a few months as well. My Dr. is probably right and I have something else going on as well. I have read where surgeries can trigger autoimmune diseases so maybe that is what happened with me. Hopefully I can get some answers. It is no fun feeling like I have the flu (minus the fever) for six months straight.
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1 Reaction@fox940 when I experienced it, it definitely felt different from the flu, but the telling thing I experienced was that I expected the flares. There was a definite cyclic nature to the bouts I would experience. Be sure to keep a journal and bring it with you to appointments.
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2 ReactionsI just found an interesting article that was in another online group - "Scientists can finally explain how autoimmune disease spreads" from ScienceNordic (independent news on research in Nordic Countries):
http://sciencenordic.com/scientists-can-finally-explain-how-autoimmune-disease-spreads
John
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