Questions about Drug Induced Lupus while taking Minocycline for Scleroderma

[Annette]

Hello everyone, I am new here. My rheumatologist just informed me my latest blood tests show I have drug induced Lupus due to taking Minocycline since February 2017. I do NOT want to stop taking the minocycline as I have noticed a big positive difference in my symptoms. I can not go back to feeling that intense pain, debilitating fatigue and sickness I was experiencing before I started the minocycline therapy. I am absolutely frightened at the thought of stopping the antibiotic. So I am asking everyone here who are also taking the mino therapy:
-How can I continue taking minocycline safely?
-Would taking Doxycycline be safer? Or could Doxy also cause Lupus?
-Is there any other antibiotic similar in its effectiveness as a therapy for Scleroderma?

I greatly appreciate all the advice you have as I do not have a doctor who embraces the antibiotic protocol leaving me sorta flying solo in this battle against scleroderma. Thank you all for caring! : )

Much Love and God Bless,

Annette

[Maz]

Annette, I read your post on the Inspire daily digest today. I don’t post there…just occasionally read the digest to try to stay in touch with needs of SD AP community. The fellow patient insight CameronC shared with you sounded right, if DILE is confirmed by bloodwork and you aren’t on other types of meds that may also cause it.

Have you looked at the RBF Research page yet? If not, suggest you read through the research there that describes other abx that have been used for SD. Some of these are also described in the Scammell books. Worth reading those too, if you haven’t yet. Rheumies will use Minocycline as a DMARD, but less likely to use other types of abx and you may need to seek out an experienced AP doc for help if you want to continue on another class of antibiotic.

What antibiotics have been used to treat scleroderma and it’s various forms?

Just curious…what labs confirmed your DILE diagnosis and which other meds (if any) do you take?

[Lynne G.SD]

Hi Annette;
Glad to see you got here.Just letting you know that I have a couple friends who got bad colouring from the mino,switched to zith and are in great shape.They both used zith,5 days on and 5 off.Hope this helps, Lynne

[Annette]

Hello Maz, thank you for responding. I greatly appreciate your advice. Thank you for the link, I will read it ASAP. I had contacted Roadback about 2 years ago asking to find an AP doctor in my area of Staten Island, NY. However, the response was that there wasn’t any known AP doctors located near me in or close to NY. My GP was kind enough to prescribe the minocycline. I was surprised the blood tests my rheumatologist ordered showed drug induced lupus considering I don’t feel any symptoms of lupus. I felt I was doing very well on the mino. The other medications I take are simple meds: Levothyroxine 75mcg for hypothyroid ( been taking this med for over 20 years now ), ibuprofen for occasional pain, daily low dose aspirin, daily probiotic (30 billion), and various vitamins. Regarding my labs that confirm the DILE diagnosis, I struggle to understand the terminology and meaning when reading the test results given to me by my doctor, so please bear with me as I try to decipher and explain whats in the paperwork my rheumy sent me home with. As I can understand it the test is as follows: ANA TITER 1 is positive ( 1:640 H ) and (negative <1:40 Titer) then below that it shows ANA PATTERN 1 positive Homogeneous. And below that it states: Homogeneous pattern is associated with systemic lupus erythematosus (SLE), drug induced lupus and juvenile idiopathic arthritis.
The paperwork also shows a reference range of: <1:40 Negative, 1:40-1:80 Low Antibody Level, >1:80 Elevated Antibody Level. So if I’m understanding this correctly I guess my DIL diagnosis is on the low antibody level.
Sorry for the extremely long response message, I just get so overwhelmed trying to understand this disease and medical stuff.
Thanks again for all your help and patience. 🙂

-Annette

[Annette]

Thank you, Lynne. That information is definitely helpful, I will surely keep it in mind. 🙂

[Maz]

Hi Annette,

I think I recall talking with you when you came to the foundation a couple years ago.

Were there any other labs drawn, because a positive ANA – especially without symptoms – is not enough to confirm DILE. The fact that you were told this on just the basis of a positive ANA (homogenous) and you are asymptomatic is very curious. Can you see any lab results for anti-histone ABs and anti-double or single-stranded DNA?

I’m guessing your original diagnosis was scleroderma? If so, was your ANA a different pattern before? ANA pattern can morph over time and an homogenous pattern can also be indicative of mixed connective tissue disease, where autoimmune diseases appear to overlap. I have also read that ANA can occasionally be positive in Hashimoto’s thyroid disease (though Hashi autoimmune thyroid patients generally are at greater risk develop another autoimmune disease). Stranger still, see page 3 of the following study:

Risk factors for ANA positivity in healthy persons

“The persistence of this type of autoreactivity in the human population suggests that antinuclear antibodies may be an important component of the normal immune response. Most individuals with a positive ANA do not have an autoimmune disease and most also are unlikely to develop one”

So, what I’m trying to say is that a positive ANA homogenous test result could mean a number of things. It’s just a first-tier test and further testing would be necessary to confirm a diagnosis of DILE, particularly in the absence of symptoms.

Have you tried the new Doctor Search page yet? There is a recently listed dermatologist in NYC who is treating rheumatics with AP. Also, there is an AP rheumy at Hospital for Special Surgery where you might try to get a second opinion.

[Annette]

Hi Maz, wow, that’s very interesting, I did not know that. Looking at both my current lab tests and last year’s test done in March 2017 I don’t see anything that specifically mention’s anti-histone ABs and double- or single-stranded anti-DNA. However I do see a test for Sjogren’s AB (ss-A and ss-B) are both negative. And I also noticed the test from March 2017 also shows the same result for ANA TITER 1 is positive ( 1:640 H ) and (negative <1:40 Titer) and ANA PATTERN 1 positive Homogeneous. And the strange thing is I had a different rheumatologist at that time order the 2017 test and she never mentioned DILE to me. So I don’t know what to make of that.
And yes, my original diagnosis was scleroderma. I don’t have my test results from 2016 when I first was tested and diagnosed for scleroderma.
I will definitely try the new doctor search page, will it show the names of the NY doctors you mentioned?
Thanks for all your help, I am so very grateful! 🙂

[PhilC]

Hi Annette,

Perhaps your rheumatologist is trying to scare you off of the minocycline. Some rheumatologists use the possibility of DILE as a scare tactic to dissuade patients who ask for minocycline from trying it. And yet they are quite willing to prescribe other drugs that can also cause DILE.

Do your test results include C-reactive protein (CRP)? One of the indicators of DILE is an elevated C-reactive protein. If your CRP test results are normal or trending downward, then I would question the DILE diagnosis.

Recommended reading:
Minocycline‐induced lupus: clinical features and response to rechallenge

Phil

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

[Annette]

Hi Phil, I was wondering the same thing, every rheumatologist I’ve seen has tried to prevent me from continuing the minocycline regardless of how much I’ve said it has helped me. My test results show a C-reactive protein (CRP) of 1.3 in range. I find what you said very interesting, and I really don’t want to stop taking the mino. I’ve come so far in the last 18 months of taking the mino, I feel and see the benefits and I really don’t want to throw it all away. Thank you for your helpful advice. 🙂

-Annette

[Maz]

Annette, my best fellow patient insight, based on the fact that your rheumy has not confirmed a diagnosis of DILE with appropriate labs, is to get a second opinion. Yes, you will find Dr. W. on the NYC AP doctor list. He is semi-retired (knew Dr. Brown), but still seeing some new patients. His front desk may try to wave off a SD patient because he’s cutting back his caseload, but you could just say you would like a rheumatic workup and second opinion, if so. He is very thorough in his workup and AP-friendly so you wouldn’t have to swim upstream to get answers.

I think it’s premature to say your current rheumy is telling you a fib to scare you. That would be unethical professional behavior and no caring medical professional would want to do that. It is highly unusual, however, to get a diagnosis of something for which you have no lab confirmation or even symptoms.

[Annette]

Thank you, Maz. You’re right, I should get a second opinion. Would you know of the additional tests I need to confirm DILE?
I don’t mean any disrespect to my previous and current doctors because I know they feel they are trying to give me their best care. However, I do wish they would not disregard my claims of the antibiotic therapy working very well for me. I very much wish they would research AP and it’s successes before they completely dismiss it’s possible treatment. It’s very frustrating not to be heard by the people I have to entrust my healthcare with. And that’s why I am extremely grateful to the Roadback Foundation and everyone on this site who are beyond helpful and caring. So I want to say “Thank You all for helping and listening.” 🙂

[Maz]

Hi Annette,

Would you know of the additional tests I need to confirm DILE?

The most helpful lab tests for DILE can be found by running searches online, but websites vary and can harbor misinformation.

The tests that confirmed DILE for me were:

ANA (homogenous) that was previously negative. In folks who have a pre-existing rheumatic disease and their ANA was already positive (like you), it’s not really helpful, unless the pattern changes, which can happen over time. E.g., from speckled to homogenous. ANA is just a first-tier test that helps to differentiate between various rheumatic states and can be a helpful test to alert to the potential of DILE (if homogenous) in those for whom it did not show up previously and are expressing symptoms suggestive of DILE.

The ANA test and drug-induced lupus

“The ANAs seen in drug-induced lupus are primarily autoantibodies that are able to react with a histone-DNA complex (the major component of the nucleus of all cells). A special laboratory test exists to detect Immunoglobulin G (IgG) antibodies to this histone-DNA complex. This is a sensitive marker for lupus-like disease that is actually brought on by certain drugs. (Quinidine and hydralazine are exceptions, as only about one-half and one-third, respectively, of people with lupus induced by these drugs have this type of anti-histone antibody.) This specific profile of autoantibodies is also present in most people with systemic lupus, although they usually have additional abnormal antibodies.”

Note the mention of “histone DNA complex” in the above quote and the text that is bolded. There is a further test to measure anti-histone ABs (antibodies) that complex (bind with) DNA in the cell nucleus. In order to measure antibodies directed at histone, the anti-histone AB test can help (and is sometimes the clincher diagnosing DILE, because it’s less frequently positive in real lupus than the fake, drug-induced kind.

This is why tests used to diagnose real lupus as opposed to DILE are also needed. In the case of DILE, the anti-double stranded DNA (anti-dsDNA) test (a test to confirm real lupus) is most often negative, but a secondary test that measures anti-single stranded DNA (anti-ssDNA) may be positive. The anti-ssDNA test could be viewed as the “fake” lupus marker when unaccompanied by the real lupus marker, anti-dsDNA.

It’s quite complex to diagnose DILE, as some tests overlap with real lupus. So, the main goal is to first rule out differentials, like real lupus, mixed connective tissue disease, etc. (due to the positive homogenous ANA). Once these other rheumatic diseases have been ruled out with relevant rheumatic testing, the above tests are helpful in confirming DILE, if symptoms are suggestive of it, and when someone is taking a medication known to potentially cause it. It’s just not adequate to tell someone they have DILE just because their ANA has a homogenous pattern.

Any rheumatologist or immunologist/allergist should have the knowledge to differentiate between real and drug-induced lupus. So, I wish you the best, Annette, in seeking your second opinion. Let us know what you discover!

[Annette]

Hi Maz, Thank you so much for all your helpful information, I will definitely follow your advice. And thank you for explaining such a complicated subject. God Bless! 🙂

-Annette

[Maz]

Annette, please know I am just a fellow patient so I’m unable to dispense medical advice. I can really just share personal experience and what I’ve learned as a result. 😉 Wishing you the very best and hoping you will return here to share what you discover. We all learn here from one another here – it’s part of the RBF philosophy of “paying-it-forward” to our fellow APers and what keeps the foundation alive. At least on this forum, no one has to swim upstream in choosing AP and there is a wealth of experience to learn from with respect to this treatment choice.

[Annette]

Hi Maz, Yes, I understood that from the beginning. I just wanted to let you know how grateful I am for any information, especially from experienced people on the subject. I value this forum and the community and I have learned quite a bit. Thank you again for your input. 🙂

-Annette

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