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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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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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3 ReactionsThank 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.
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3 Reactions@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........
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2 ReactionsHi @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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2 ReactionsI'm hoping so, too! Please keep us posted. I don't think it's fibromyalgia either but I merely provided the background as an example of Mayo "recognizing" a symptom complex that at the time, was not known widely, in the medical literature or taught in medical schools. Whatever you are dealing with, I feel that they will decipher it and hopefully have some treatment recommendations. In re-reading your initial post, I wonder if the polymer clip (that replaced the titanium clips) can cause toxic, allergic or inflammatory reactions? It is good that you are making a list of your symptoms, procedures, dates, medications, med results/reactions, and all elements that affect your wellbeing prior to your visit. I hope your appointment goes very well, that you will soon feel much better.
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2 Reactions@taterjoy Thank You for the kind words. When I woke after surgery and the nurse told me they had to put a Polymer clip in me I instantly panicked thinking I didn't want anything in my body. Had no choice though or I would have bled internally. I researched it as soon as I could and I cannot find anything on Polymer clips causing an autoimmune reaction. Metal/Titanium clips allow antibodies to attach and an autoimmune reaction to occur even if you're not allergic and I suspect that was causing some of my issues, but now I'm not so sure they had anything to do with it since I'm still sick this long after. Polymer/plastic does not allow antibodies to attach as nothing corrodes to enter the bloodstream like metal does. So in theory I should not be having an autoimmune reaction to it. Good question as you can see it has crossed my mind and I have researched it.
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2 ReactionsGreat info, thanks. Spoke to Mayo today and they have to review my referral and said they'll call in a few days. Ball is finally rolling so to speak.
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3 ReactionsTwo days ago I tested positive for Influenza B and I am very ill. Never had Influenza before (that I know of) and never want to have it again. It is horrible. Now I know why my symptoms started to worsen at the beginning of the week. My hips and lower back ached horribly. As the virus has progressed the body aches have lessened and now my autoimmune pain is less than it has been in months. I suspect that my immune system fighting off the virus has taken away from attacking my own body.
Mayo Clinic called earlier today and after reviewing my referral the Rheumatology Dept. doesn't feel that they can help me. My information is being transferred to general medicine so they can review it. I'm a little concerned that no one will be able to help me as the rheumatology dept. seemed like the right fit. They are supposed to email me some questions and call in the next 48 hours.
FLU sucks! And it really can kill you. Stay hydrated. I had it recently, and the only comfort I got was sleeping on a large ice pack. Don't try to force foods, just water. If you are throwing up, get someone to fetch you something with electrolytes in it, like Gatoraide or Pedialyte.
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