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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

@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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I’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.

@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 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.

@johnbishop

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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Great 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.

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.

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.

@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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@fox940, I agree with @robbinr. The influenza is nothing to mess around with. I don’t think I would wait for 48 hours to hear from the doctors. I would keep bugging them. Mayo Clinic has some good information here:
https://www.mayoclinic.org/diseases-conditions/flu/symptoms-causes/syc-20351719

Do you also have a high temperature? I have no medical training or experience other than to know when the body temp goes up that can be a bad sign when it gets too high…and you need to do something about it.

John

If a fever gets up to 104 it can induce febrile convulsions. Mine got up to 103 with the last bout of Flu and I couldn’t think straight.

@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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@johnbishop Hi John, I have been to my primary care Dr. for the flu. I have been prescribed Tamiflu as well as my wife and kids. No idea how I came down with it as I have never tested positive for the flu before. I’m on day 4 for symptoms and I think my fever may be done. It had gotten to around 101 at its highest. I am controlling the fever with Tylenol. My Dr’s office has only had one other confirmed case of the flu this fall. My pharmacy had to order the medicine as I am their first prescription request this fall. I’m still very ill, but feel like maybe the worst is over. I hope so. I have a bad cough and keep getting the chills and sweats along with a bad headache.

My call from Mayo is in regards to the drug induced lupus/auto immune issues I have been suffering from for several months. The Rheumatology Dept. at Mayo advised me today that my condition doesn’t fit their expertise and they are transferring my referral/medical case to General Internal Medicine. I questioned the lady that called about the drug induced lupus and how they couldn’t help with that? She replied she didn’t know. She said that General Internal Medicine would be calling me in the next 48 hours (I assume business hours, she didn’t clarify) and send me an email with additional questions. If Mayo doesn’t agree to see me based off my symptoms/unknown illness I’m not for sure what I’m going to do. I can’t keep living everyday in pain without answers. I will hold out hope that I can get in with General Medicine and get some answers.

@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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@fox940 sorry for my confusion, hoping the flu symptoms go away quick and you can find some answers for your questions in regards to drug induced lupus.

John

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@robbinr

If a fever gets up to 104 it can induce febrile convulsions. Mine got up to 103 with the last bout of Flu and I couldn’t think straight.

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About a month ago I had a Dr. appt. and we discussed whether I should get a flu shot with my autoimmune issues I’m having. It was decided that I probably shouldn’t get a flu shot this year so as to not flare up my symptoms and take the chance of making them worse. Never had Influenza A or B before and wouldn’t you know it…….this is the year I end up with it.

That is very interesting! It is because of my autoimmune disorder that my doctor recommends that I Get a Flu shot every year! This year I was late getting it because I was sick with something else, and sure enough, I got the Flu. After I recovered I went and got a Flu shot anyway. There is a lot of stuff floating around out there. I am surprised that Drs. don’t provide at-risk patients with Tami-flu at the beginning of the season because apparently, by the time you call the doc with flu-like symptoms they say it is too late! RR

I got the flu shot this year. Wasn’t feeling my best before I got it and ended up in bed for 3days after I got it. I wonder with auto immune issues if there is a good time to get the shot?? My Dr always recommends it but after this year I AMA not so sure ?

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?

@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 did they give you any reason in the email for not being able to make an appointment? I’m not sure I would know what to do either but I’m hoping it would be keep pushing them until I was satisfied with their answer. Maybe it takes some phone calls?

John

@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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This is the email I received this morning. Typical canned response because it is contradictory. I have already worked with my provider and we determined that going to Mayo Clinic was in my healthcare’s best interest as no one can give me a diagnosis. I have a referral from my Rhuematologist and did an online form explaining my symptoms, etc. Don’t know what else to do? It seems that they think they probably cannot give me a diagnosis is my guess? I do appreciate that being done upfront instead of me missing several days of work and it would be costly to do. These Autoimmune issues are so poorly understood and modern medicine has failed me in this regard as modern medicine has had a direct correlation in causing my issues. I can call and try to get a better answer, but at this point I’m not for sure I want to waste my time. I guess I’m fortunate that what I’m dealing with is most likely not fatal, but it really sucks being in pain day after day after day with no reasonable explanation why I’m suffering from the pain I’m in. There has to be a reason, my body just didn’t decide one day to start the continuous pain without a reason. There is an underlying cause and that is what I was hoping Mayo could help me with. I guess not…

“Thank you for expressing an interest in Mayo Clinic. Your healthcare information has been reviewed by our Physicians in General Internal Medicine and we regret to inform you that we are unable to offer you an appointment. If your medical situation should change, you should seek care locally and work with your provider to determine if a referral to Mayo Clinic is in your best healthcare interests.

General Internal Medicine
507-284-4805

This e-mail was automatically generated from a non-response mailbox. Please do not reply to this email.”

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