Minocycline induced lupus-RA

[Debra S]

After 17 wonderful years on Minocycline therapy for longstanding RA they believe I have a severe case of DILE. (the first 19 years after my diagnosis on standard meds did very little) I literally have lived 17 years with no symptoms, unless I missed my pills a time or two. I have been off the minocycline for 6 months and 1 week now, and am a lot better but still very sick and my research shows it can be up to 2 years to recover, especially when someone has been on it as long as me. (I ignored the symptoms for a long time before I got very sick)
I was switched to plaquenil 6 months ago, along with NSAIDS, but 2 weeks ago my RA came back with a vengeance. I am desperate to find an alternative to minocycline. Is there one? Obviously it can’t be in the same family as minocycline. Any help from you all would be very appreciated…even with as sick as I am, I cannot recommend Minocycline therapy enough. Since my diagnosis is still somewhat up in the air, because DILE is not always easy to spot on antibody tests, I have some small hope something else is responsible. I can’t bear the thought of dealing with this disease again to the degree I did those first 19 years. Ugh. Anyone have any experience with this? please let me know! Debra

[Maz]

Debra S wrote:

After 17 wonderful years on Minocycline therapy for longstanding RA they believe I have a severe case of DILE. (the first 19 years after my diagnosis on standard meds did very little) I literally have lived 17 years with no symptoms, unless I missed my pills a time or two. I have been off the minocycline for 6 months and 1 week now, and am a lot better but still very sick and my research shows it can be up to 2 years to recover, especially when someone has been on it as long as me. (I ignored the symptoms for a long time before I got very sick)
I was switched to plaquenil 6 months ago, along with NSAIDS, but 2 weeks ago my RA came back with a vengeance. I am desperate to find an alternative to minocycline. Is there one? Obviously it can’t be in the same family as minocycline. Any help from you all would be very appreciated…even with as sick as I am, I cannot recommend Minocycline therapy enough. Since my diagnosis is still somewhat up in the air, because DILE is not always easy to spot on antibody tests, I have some small hope something else is responsible. I can’t bear the thought of dealing with this disease again to the degree I did those first 19 years. Ugh. Anyone have any experience with this? please let me know! Debra

Hi Debra,

Yes, I have experience with DILE. I developed it after being on mino for nearly a year and had actually got so close to remission I could taste it. It it took several months before I realized something wasn’t right. My very smart Lyme doc figured it out pretty quickly and sent me to an immunologist to have tests run to confirm it. I was positive for ANA with homogenous pattern (previously negative), single-stranded anti-DNA (negative for double-stranded anti-DNA) and anti-histone antibodies. After stopping the mino, within several days I was much better and it took about 3 or 4 weeks for my system to wash everything out. Labs returned to normal, except for ANA which, apparently, can remain positive for up to two years. I actually switched to doxy and did okay on it for 2 years (but never as well as on mino) until I, again, developed DILE. I had been on tetracycline in high doses for Lyme, prior to the mino and was fine on it for about 4 years in total. Plaquenil, on the other hand, while it helped initially for about 5 months, led to worsening symptoms and again, I got tested for DILE and it was back. According to Medscape and their list of offending DILE-causing drugs, plaquenil (as well as several orthodox rheumatic drugs, like sulphasalazine, penicillamine, gold and the biologic drugs) is listed among them. Seems that if a person is prone to developing DILE, then other listed drugs that are known to cause it, can also be a problem.

http://emedicine.medscape.com/article/1065086-overview#a5

Note: In the Medscape article, mention of certain “metallic compounds” causing drug-induced lupus is mentioned. Upon further research, I have found a case report heard by the FDA where a correlation with the mercury in metal fillings may also be cause for concern with DILE. I’m scheduled to have two remaining silver fillings removed early in the new year.

http://www.fda.gov/ohrms/dockets/dockets/06n0352/06n-0352-emc0013-02.pdf

When I discovered last spring that I had a toxic multinodular goiter, I was offered anti-thyroid meds and knew from my researches that they were a big no-no as they are also known to cause DILE. So, my only options for treatment were radioactive iodine to ablate the hyperfunctioning nodules or surgical removal. As one cold nodule was very large, in addition to 6 hot and hyperfunctioning nodules, I saw a surgeon who recommended total removal. This is by-the-by, but I have always wondered if my toxic goiter may have also affected how my body metabolizes certain drugs. It is said that people who are “slow-acetylators” have trouble metabolizing some medications, so what if a thyroid problem like I had also caused drug metabolism issues? The thyroid is the body’s master gland for metabolism.

In answer to your question, yes, there are many other classes of antibiotics that can be used in AP. Dr. Brown didn’t just limit treatment to the use of tetracyclines and he used a number of different classes of antibiotics, depending upon a person’s pathogen load and tolerance (see book). Of course, tetras have the amazing immune-modulation and cartilage-protective effects that other antibiotics don’t have, which is a shame, but if a person’s rheumatic disease is caused by chronic infection, then other similar classes of antibiotics should help, too. For e.g Dr. Brown used a class of antibiotics, called, erythromycins, and today, in addition to rounds of IV clindamycin that can be helpful for some folks, oral macrolides, like azithromycin and clarithromycin are used. If a person has a history of strep and positive ASO titers, or Lyme, penicillins can be very helpful. In fact, a penicillin can be taken alongside an antibiotic, like clarithromycin, as they work synergistically and are compatible, unlike a tetracycline and a penicillin together.

Working with an experienced doctor can make a huge difference when road blocks like this are met. DILE doesn’t preclude a person from using AP; it just means that treatment strategy needs to be changed up. Do you have a doc who can help, Debra? If not, I’d be happy to take a look at what we’ve got for your state, if you let me know where you are and, if none, if you’re willing to travel further afield. Ideally, if you send an email to apdoctorlists@roadback.org, I’ll get a copy and can reply via email.

Try not worry – I know that’s cold comfort right now, but you can get this figured out with a little brain-storming and self-advocacy. 🙂

Also, in case you missed it, there is a FAQ on this topic – see FAQ # 17, here:

https://www.roadback.org/faqs/

[Linda L]

before I realized something wasn’t right.

You both have written about worrying symptoms before you have been diagnosed with Lupus. What were they?
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[PhilC]

Hi Debra,

Debra S wrote:

I am desperate to find an alternative to minocycline. Is there one? Obviously it can’t be in the same family as minocycline.

Did a doctor tell you that? The reason I ask is because it’s not correct. The other tetracycline antibiotics do not share minocycline’s propensity to cause DILE. I’m not saying that the other tetracycline antibiotics can’t cause DILE since we cannot say for certain that they can’t. However, if the other tetracycline antibiotics are able to cause DILE, the risk is much lower than it is for minocycline.

For more info, see:

Comparative safety of tetracycline, minocycline, and doxycycline.

Association or lack of association between tetracycline class antibiotics used for acne vulgaris and lupus erythematosus.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Debra S]

Hello and thanks for the wonderful post! Maybe there IS hope! I am in misery, and have resorted to taking prednisone just to survive this pain…I have an old prescript from this past winter and can take a 5 milligram pill to get almost total relief of the neck and shoulder agony I am now getting, at least for a day or so. No, my local doctor/rheumatologist is not helpful-I forced him to give me the antibiotic treatment 17 years ago. And it worked immediately. He MAY know about the others, but my appointment is tomorrow. so hoping to get something. I would love to hear of other antibiotics to treat this. Maybe there IS hope again. In my case, I am very fairskinned redhead, and had begun to get skin staining a few years ago-I avoided sun as much as possible and wore sunscreen on my face each day, but still got some of it anyway, and the whites of my eyes turned blue. At that time several docs told me I should get off it, but of course, I did not want to. I first began to notice that I was getting a feverish feeling on the evenings I took my my mino dose. Just felt hot and unwell. Then I began to feel strange little stabs of pain, thin, sharp, like a needle stuck in your muscles. But not in the joints-in places like my upper arm, or my waist, or the skin of my ankle. Odd, random places. I continued to ignorethis. Finally, the fever feeling got worse and I was feeling unwell…I had suffered with an abdominal abcess/diverticulitis a few years before, and I felt much the same way-just overall sick feeling, with this slight fever thing. I thought it was another diverticulitis issue building, an infection maybe starting in my gut. So, I decided to double up on my mino for a couple days, just to try and knock out whatever smoldering infection might be going on. I took 2 mino for 3days in a row. And suddenly I could barely breathe. Left arm pain, elephant on the chest, chest pain etc. Went to the ER assuming a possible heart attack. My troponin level was raised-but not enough to indicate heart attack. a stress test next day showed fairly normal, but one area of my heart wall was not working right. This was in October 2014. I went to a cardiologist for an echocardiogram, which showed pericarditis. (water around the heart called an effusion) They also sawsomething called a septalbounce,which is indicative of your heart being constricted-which sometimes requires a stripping of the pericardium (the sac around your heart) which is a major surgery. At this point, they referred me to Cleveland Clinic (I am in NE OHIO by the way). My appointment wasn’t until March of 2015. I had a cardiac MRI and all the tests they put you thorough. No inflammation was seen on the MRI, which slightly baffled the doctor. But my ultrasensitive C reactive Protein level was high. So along with the effusion/water around heart, high troponin level and chest pain/difficulty breathing, I was diagnosed with recurrent pericarditis and put on Aleve, 4per day. By June, the septal bounce had gone away, which was also odd apparently I was getting
blood spots randomly on my skin, also getting small pinkish flaky round spots occasionally on my face and a
bunch of strange little brown growths, like warts almost, on my upper thighs and my trunk. After another cardiac MRI which showed no inflammation, the dr sent me to rheumatology. They listened to the story and immediately said drug induced lupus. They did ana tests-and lots of others-but mine did not show much. I did have a positive ANA–hpowever, RA can sometimes have positive ANA> unfortunately I never had an ana done before this, so I don’t knoiw if I’m one of the 20% or so who have positive ana from my RA. My sed ratewas low–my arthritis still bvery well controlled by the mino. They switched me to plaquenil, and I continued on the Aleve. I had a very high level IgG, but negative dsdna and others. Not positive for lupus, or any of the other autoimmunes either, and they also ran a screen for lymphoma which was negative. I stopped the mino June 3rd, so just passed 6 months. I developed severed cramps after eating, lost 20 lbs, finally cut out gluten and felt better, then began to get horrible pain in my ribs, and developed a “rub” a funny creaking sound under my left rib-which is caused by pleurisy. This goes hand in hand with DILE–all the linings of your body–lungs, heart, stomach, bowels, can be affected. at this point,
the brown warty things are almost disappeared, I still can’t do much walking ort I get chest pain, blood spots, and difficulty breathing. I fear they have missed something. I wonder if it really was DILE at all, but I sure had all the symptoms of abad case of it. Sorry this is so long. I am still so sick, and now in so much pain. It’s terrible. I can’t live in this kind of pain, now it’s in my neck, going into the base of my skull–I never had anything like this when my RA was bad. it feels like nerves or blood vessels affected–which can also be part of DILE, so not sure whats going on. Sorry this is so long, but for those who wanted to know my symptoms, there they are. There were many and all were severe. But then again, 17 wonderful years, and I did not listen to my body…just desperate to stay on mino as it is so wonderful.

[Maz]

Debra S wrote:
I stopped the mino June 3rd, so just passed 6 months. I developed severed cramps after eating, lost 20 lbs, finally cut out gluten and felt better, then began to get horrible pain in my ribs, and developed a “rub” a funny creaking sound under my left rib-which is caused by pleurisy. This goes hand in hand with DILE–all the linings of your body–lungs, heart, stomach, bowels, can be affected. at this point,

Hi Debra,

If you stopped your mino in June and the symptoms continued and worsened after this point, it’s doubtful that you had DILE, but more challenging to know without an anti-histone AB and single-stranded anti-DNA test. Symptoms usually resolve within weeks or a month or two in a steady way after discontinuing the mino. I’m having trouble working out your timeline, as it’s late here, but wondering if it’s possible you might have an overlap with another rheumatic disease?

Also, did anyone test you for Lyme disease or any other infection related to your pericarditis? There are a number of viral, bacterial and fungal causes of pericarditis.

Might be good to have a complete infection work-up. Hopefully, an experienced AP doc can help with this. Just saw your email come in.

[jasregadoo]

I was getting blood spots randomly on my skin

I’m so sorry for everything you’re going through, and hope you find a solution soon.

I wanted to mention how helpful this board is for even small reasons. I read your symptoms, which thankfully I don’t have at this time. But a little lightbulb went off in my head, because at my last Rheumy appt, my doctor was concerned about a red sore on my hand. It’s from a burn I got while cooking, which she was relieved to learn. The conversation switched, and I didn’t ask her why she was asking/worried.

[Author]

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