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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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@fox940 from reading the email they sent you I don't particularly like their answer either. I think you mentioned earlier that your doctors did the initial referral for the appointment thinking that the Mayo Clinic can help you get to the bottom of your health problem. It might be worth asking your doctors to request an appointment for you again...being more persistent and asking for help to get to the bottom of what's going on. I hate taking no for answer but maybe that's just me...and I especially hate "Please do not reply to this email."
It pays to be persistent...John
@johnbishop, I called Mayo this morning and got absolutely no where. They cannot give me an answer as to why my appointment was denied, but basically said that the Physicians who reviewed my information didn't feel that a diagnosis can be made and Mayo cannot help me. I asked why they can't tell me that and was told that is the way the system is set up. My Dr. can call and speak to a physician at Mayo, but they won't tell me squat. I understand that Mayo deals with millions of patients a year, but I am pretty disappointed with their standards at this point. In my case I was trying to go there with the hope of finding out what is wrong with me. My hope was crushed with the way it is currently set up to handle appointment denials. Unfortunately I am going to have to live with the fact that in my case a diagnosis cannot be made. I am going to live with the hope that my symptoms will improve over time and will hopefully not worsen.
@fox940 Hi, Fox. Don't be too hard on Mayo. It takes a lot of time and energy to keep those pillars and huge windows shined and cleaned. There is just not enough time in the day to do that and see patients, too. I asked Mayo-AZ to deal with my liver and kidneys, and they refused. Said I was going to die soon any, and nothing they could do would make any difference. Then they demanded more money to pay the diagnosis bill twice. It had already been paid once.
Hello @fox940,
I'm sorry to hear that you are experiencing difficulties getting an appointment at Mayo Clinic. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case with their colleagues, and their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time.
It is our goal to provide the best care each patient needs, however we do not want to have you incur additional costs for evaluation or travel if we do not feel we can offer care that is different from what you’re already receiving.
That being said @fox940, I'd like to thank you for reaching out to the community.
Autoimmune disease is an umbrella term for so many illnesses, often with no clear cause or definite road to treatment. Please keep asking questions, and seeking information. This is an incredible group of members, where you will find much comfort through shared experiences, and know that you're not alone.
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1 ReactionI just joined because I'm in kidney failure. I saw this post and decided to make this my first
My Mom had drug index lupus yes. ago. It was bad. The drug that caused it was prescribed for extra heartbeat and started with a P. Unfortunately she has dementia and is on hospice so I can't ask her. I hope this is some help
Hello @nanabeth, welcome to Mayo Connect. Thank you for sharing. I think the drug you are talking about is procainamide (Pronestyl®) which is one of the drugs known to cause drug induced Lupus (https://resources.lupus.org/entry/causes-of-drug-induced-lupus).
You mentioned you have kidney failure. I'm just wondering if you have had the chance to read any of the discussions in the Kidney & Bladder Group here:
https://connect.mayoclinic.org/group/kidney-conditions/. If you have any questions and you are not able to find a discussion on the topic, I would recommend that you start a new discussion in that group.
John
Hi Shane (@fox940), in reading your earlier posts again, am I correct that you contacted Mayo Clinic for an appointment in the Rheumatology Division or did your Rheumatologist call for the referral? It sounds like your Rheumatologist believes the Mayo Clinic may have more to offer, so I believe a physician appeal to the Rheumatology Division may be a good idea so that your doctor can discuss your case in more detail and why he thinks Mayo Clinic might be able to help you.
Please don't give up trying. I have a good feeling about this and I am a big fan of doctors talking with other doctors and working together to get to the bottom of a patients health problem which is the team approach the Mayo Clinic doctors use.
Hoping you get some answers soon.
John
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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2 ReactionsI am allergic to a number of blood pressure medications. I am now taking Diovan that has a diuretic in it. They do make Diovan without the diuretic. Most of them make my throat close down.
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1 ReactionHello @mrlncrvn, 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