I have a question regarding my test result and how mincycline affects these results. My dermatologist put me on minocycline for acne. I have only been on it for about 6 weeks. (4 weeks at time of testing). I was referred to a rheumaologist for chronic joint pain. At my first appt, he was very skeptical of me having any type of auto immune issue. I don't present with the rash or actual swelling in my joints. I was diagnose with hypermobility syndrome as a child and he felt all the symptoms I do have are related to that. He did order blood work just to check though. My ANA was Speckled 1:160 with the lab range of >1:80 is positive. My Anti-dsDNA was positive at 15 with a lab range of >9 positive. My Vitamin D was low at 17.5 with lab range of 30-100 is normal. My RNP was <.2. Normal lab range is 0-.9. Smith antibodies <.2 with lab range of 0-.9 normal. My C3 and C4 were also normal.
My question is how much would only a month or so of minocycline affect these results. He seems to think my results are all minocycline related, but what i have read is that rarely does minocycline cause positive Anti-dsDNA. I am so confused and wondering why the Rheumy is so dismissive of my results. He wants me to quit the minocycline and retest in 3 months. No action until those results. Should I be concerned? TIA,
Julie, hi. Maybe we read the very same info on DILE...? Like you, I read that anti-ds-DNA is sometimes positive in it, but not too often.
Do you know whether other DILE indicators were found, e.g., anti-ss-DNA (that's single-stranded as opposed to double-stranded), anti-histone, but accompanied by normal C3/C4 complement levels? Those findings apparently are hallmarks of DILE.
My hardcover says DILE symptoms can crop up fast, even within several weeks, and that joint pain is a very common symptom. Did your joint pain rear up before or after you started the drug?
Hardcover also says that DILE symptoms should start to recede within days or weeks if the suspected drug is discontinued. So if your joint pain started AFTER the drug, maybe the only good way to test his theory is to discontinue it?
Obviously I'm only a patient, so above is what I'd ask if I were you, as opposed to being "answers". I hope you post more soon. Wishing you good luck & sending best wishes, sincerely, Vee
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Thank you so much for your reply! Under normal circumstances, I would agree that it does sound like it could be DILE. However, all of my symptoms started long before I started the minocycline. I even told the doctor this. Basically, since I was around 5 years of age, I have had chronic joint pain. At 11, I had mono. At 13 I was dx with CFS. In my early 20's I was dx with IBS. In my late 20's I was dx with Stage 1 CMC arthrosis (arthritis of my thumb joints) and mild peripheral neuropathy. At the first appt with my rheum., he was very dismissive of any of my symptoms. At the follow up to get my blood work, he was a little more concerned, but still didn't think my symptoms fit a connective tissue issue. As I told him, I feel like my symptoms got drastically worse when I had my daughter 6 years ago. She was my 3rd child and an emergency c-section (my first surgery ever). Since her, my pain has gotten worse. The fatigue has gotten worse. Joint stiffness has gotten worse. And so on and so on. I don't know. It is just frustrating to feel something isn't right, and not getting answers. I have stopped the minocycline and I guess I will have to wait until my retest in 3 months to get more answers. Also, he didn't order the ssdna or anti histone, so I don't know about those. The tests I posted are the only ones ordered this go round. I think he added the anti histone for the next test in 3 months.
Last edited by gooberjlm; 04-11-2012 at 05:19 PM.
Reason: add more info.
Hi. Even our early lives sound similar! My problems started very young (fevers & convulsions from heavy sulfa antibiotics, head-to-toe blistery skin lesions, chronic pain at 13, etc.) IBS from mid-20's; next migraines, urinary misery, and anemia. Last came SCLE rashes (subacute cutaneous LE), which I sought answers for, for 8+ years.
Have you seen the "alternative criteria" in the sticky posts (permanent info posts at top of thread list)? When I finally went to a teaching hospital rheumatologist, his questions were so different than I'd been asked. I only realized after Dx that he'd reviewed not just the ACR criteria, but also those "alternative criteria".
BTW, I tested + for anti-Ro; were you tested for it? I think anti-histone is positive in most people with DILE, but because its also positive in roughly 40% of people with SLE, alone it isn't definitive. And I believe anti-ss-DNA test is typically done when DILE is a candidate.
Is this the first rheumatologist you've seen? Based on your life history, I truly don't like that he appeared dismissive. My bolting to a metro specialist made an enormous difference, and so quickly it made my head spin. Could you try another specialist? Have you borrowed library hardcovers? (That was my other breakthrough, reading & recognizing myself, rash & all.) I hope you start a new PLAN B. Looking forward to your updates, bye for now, Vee
Again thanks for your reply. I was very surprised that if there are other tests that can help differentiate between SLE and DILE that the doctor didn't order them the first time. He KNEW I was taking the meds. I honestly think that he didn't expect my results to come back elevated considering the very short amount of time I had been taking it. On the first appointment I had the feeling he thought like every doc i had ever seen. They all seem to think I am a hypochondriac. Since I don't have hardly and physical symptoms, they think it is all in my head. When my results came back positive, he at least seemed more willing to listen. I had never thought about it, but when you mentioned sulfa drugs, it reminded me of something. There is mention in my childhood records of me having several "reactions" to sulfa antibiotics when I was very little (1-2). They never believed I had a sulfa allergy though. And although I don't have a malar rash (and never have) I have in the last 5 years developed cysitc acne all over my body (sort of like boils). I also avoid the sun, not because of it causing rash, but because I burn VERY quickly or get headaches or sick from being in it. I suffered from migraines (light sensitive, sounds, vomiting kind) until my early 20's. Not to mention that I had chronic strep (3-4 times a year) until I had my tonsil removed in 2010 as well as chronic URI or sinus infections. I think there has to be a reason that I was always getting sick and more prone to getting all those illnesses. If it isn't SLE, that is fine. I just want to know one way or another and all the waiting to find answers is stressful. I stopped the minocycline 3 days ago, and so far my symptoms are still the same as always. LOL. sorry. It is just nice to have people who understand the frustration of being chronically in pain or ill and not think I am completely crazy.
I didn't get skin reactions from sulfa antibiotics either. Got very high temps & convulsions, only stopped when drs. stopped the antibiotics. I only found this "useful" decades later, after reading the "alternative criteria".
Your "cystic-like boils" could be useful. Have you had them biopsied? I had multiple biopsies done locally, then learned they were done incompletely. The last step, immunofluorescent stain tests, weren't done. My metro rheumatologist referred me to dermatopathologist (dermatologist + pathologist) who retested my old punches and did a new one. Everything came back positive for a rare subset of lupus called Ro-lupus, and by that time I met > 4 criteria as well. Those stain tests look for deposition of "immune junk" between dermal & epidermal layers of skin: if linear lines are seen, that's considered very diagnostic of lupus.
What do your lesions look like? Clear? Reddish? As a kid, I had widespread watery blisters filled with almost-clear liquid all over my body, big, like a quarter or half-dollar, very puffy. 30 years later (!), my new specialists wondered if those were "bullous lupus" (too late to know for sure).
My adult rashes started as raised bumps, like mosquito bites but not itchy; new ones appeared every 2-3 months on upper arms & back. A few years in, those bumps started expanding into perfect circles with clear centers, then expanded outward & lost circularity, then faded without scarring or depigmenting. Rash was finally Dx'ed as subacute cutaneous LE (SCLE), the annular (targetlike) form. But there's a 2nd kind of SCLE rash called psoriasiform, which looks like psoriasis but isn't. Both SCLE rashes are heavily associated with the anti-Ro autoantibody; they don't tend to scar or depigment; they do tend to be extremely photosensitive.
The ACR criteria can mislead. Because they include only two rashes, discoid and malar, it may seem that those are the ONLY two lupus-specific rashes. There are actually > 12, but the others aren't included presumably b/c they aren't as useful diagnostically, maybe because they are less commonly seen in SYSTEMIC lupus (as opposed to CUTANEOUS lupus)? I dunno, really, that's just a guess on my part.
As you say, one wants help, not a particular Dx. So I hope you keep reading, pondering, posting, and considering other specialists if you're feeling stuck. YOU'RE NOT CRAZY! It was suggested that I was, annoying b/c I'm one of the most rational people I know (or so I'd like to think ). Bye for now, Vee
Last edited by VeeJ; 04-12-2012 at 06:35 AM.