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?

@fox940

Received an email from Mayo Clinic today stating that I cannot get an appointment with them. Less than impressed with Mayo Clinic. It is touted as the place to go for hard to diagnose diseases and they won’t even see me. Don’t know what I’ll do now?

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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

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@fox940

Received an email from Mayo Clinic today stating that I cannot get an appointment with them. Less than impressed with Mayo Clinic. It is touted as the place to go for hard to diagnose diseases and they won’t even see me. Don’t know what I’ll do now?

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@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.

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@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.

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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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I 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

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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

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@fox940

Two 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.

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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

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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 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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@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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Hello @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

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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.

Liked by Gem

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@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

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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@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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@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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