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fox940
@fox940

Posts: 21
Joined: Nov 27, 2017

Drug Induced Lupus

Posted by @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?

REPLY

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

@johnbishop

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

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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.

@johnbishop

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

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Thanks for the information. I read it and unfortunately besides the comments about Drug Induced Lupus don’t seem to fit me very well.

@johnbishop

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

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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.

@kdubois How long did it take you to recover from DIL after stopping the medication?

@fox940

@kdubois How long did it take you to recover from DIL after stopping the medication?

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I 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.

@fox940

@kdubois How long did it take you to recover from DIL after stopping the medication?

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Thanks 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.

@fox940

@kdubois How long did it take you to recover from DIL after stopping the medication?

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@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.

I 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

Hi @fox940,

Autoimmune diseases can be tough to diagnose; the list of autoimmune diseases is long and varied, and they can often be asymptomatic or share symptoms. There are a few discussions on Connect which I encourage you to read:

– Undiagnosed auto immune disease https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune diagnosing problem https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/
– Systemic lupus erythematosus (SLE) https://connect.mayoclinic.org/discussion/systemic-lupus-erythematosus-sle/

I’d also like to introduce you to @taterjoy @lisabeans @sebley12 @brie87144 @peggy1949 @robbinr @jewel8888 @steeldove @hchristopher @regeanna @whyus @kspiel – a few Connect members who may be able to provide some more insight.

@fox940 you are not alone in feeling the frustration of not getting a clear diagnosis; if you wish, do let us know if you have any questions after your appointments at Mayo Clinic.

@kanaazpereira

Hi @fox940,

Autoimmune diseases can be tough to diagnose; the list of autoimmune diseases is long and varied, and they can often be asymptomatic or share symptoms. There are a few discussions on Connect which I encourage you to read:

– Undiagnosed auto immune disease https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune diagnosing problem https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/
– Systemic lupus erythematosus (SLE) https://connect.mayoclinic.org/discussion/systemic-lupus-erythematosus-sle/

I’d also like to introduce you to @taterjoy @lisabeans @sebley12 @brie87144 @peggy1949 @robbinr @jewel8888 @steeldove @hchristopher @regeanna @whyus @kspiel – a few Connect members who may be able to provide some more insight.

@fox940 you are not alone in feeling the frustration of not getting a clear diagnosis; if you wish, do let us know if you have any questions after your appointments at Mayo Clinic.

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Thank You for the information. I’ll be sure to read it all.

Dear @fox940, I am so so sorry you are going through this long excursion of pain and discomfort, to find a diagnosis and treatment that helps alleviate all of your symptoms. I have nothing to add to the convo as it is foreign to me, but wanted to let you know that My mom had horrible daily pain/symptoms in the 1970’s that no FP, Internist or Rheumatogist in her area could diagnose or treat. My Dad took her to Mayo (Rochester) and she was diagnosed promptly with a condition (little was known at the time), Fibromyalgia. The Rheumatologist and her Team there provided her AND her local physician in Florida with a Treatment plan. Her life improved dramatically (she’s still living well at age 86). Not that I think you have Fibro, just saying that many disorders are DIFFICULT to diagnose by even excellent physicians locally, but are more easily deciphered and recognized at a major center (such as Mayo) that focuses/researches/diagnoses rare, new, and complicated multi-system disorders. I hope that you will find helpful solutions on your trip to Mayo, and a caring team that leaves no stone unturned in evaluating your medical history, current symptoms/issues and treatment options.

@taterjoy

Dear @fox940, I am so so sorry you are going through this long excursion of pain and discomfort, to find a diagnosis and treatment that helps alleviate all of your symptoms. I have nothing to add to the convo as it is foreign to me, but wanted to let you know that My mom had horrible daily pain/symptoms in the 1970’s that no FP, Internist or Rheumatogist in her area could diagnose or treat. My Dad took her to Mayo (Rochester) and she was diagnosed promptly with a condition (little was known at the time), Fibromyalgia. The Rheumatologist and her Team there provided her AND her local physician in Florida with a Treatment plan. Her life improved dramatically (she’s still living well at age 86). Not that I think you have Fibro, just saying that many disorders are DIFFICULT to diagnose by even excellent physicians locally, but are more easily deciphered and recognized at a major center (such as Mayo) that focuses/researches/diagnoses rare, new, and complicated multi-system disorders. I hope that you will find helpful solutions on your trip to Mayo, and a caring team that leaves no stone unturned in evaluating your medical history, current symptoms/issues and treatment options.

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@taterjoy Yes, that is why I am planning on heading to Mayo…..hopefully get some answers. My Rheumatologist suggested Fibromyalgia, but I will be surprised if that is what I’m dealing with. Medications that typically are associated with Drug Induced Lupus make my symptoms worse like antihistamines, antibiotics, NSAIDS, and PPI’s/H2 Stomach acid meds. I don’t suffer from the extreme fatigue that Fibromyalgia sufferers seem to deal with, though today I am pretty fatigued and I am hurting a lot. We had a cold front come in last night after some unseasonably warm temps. I am beginning to think that adds to my pain. I really think it is autoimmune of some sort, but I may be surprised. I honestly feel like I have an infection they way I feel though I don’t have a fever or High white blood cell count. Aside from a strong positive Anti-histone AB tests my lab work is pretty much perfect. My thyroid has been checked numerous times as well, Lyme is negative, and my symptoms fit Lyme so well. Hopefully the mayo docs can figure this out. It is good to hear about positive stories where diagnosis has been made. That is what I’m hoping for……..

Hi @fox940, If you have never been to Rochester Mayo Clinic I thought the following Mayo Clinic Tours YouTube videos might be helpful.

Here is link for the playlist of Mayo Clinic video tours on YouTube, click the small bars at the upper left corner of the screen
to see the list of videos. It will start playing the main video.

John

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