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I apologize for how long this will be…hoping for some input as you are always a helpful bunch! Mino put my RA into remission from 2011 until 2016 when symptoms crept back. Switched to doxy for 5 months did well but best on mino so switched back to mino. Took mino for a month a little herxing at first then felt good. Had blood tests done and my strep titre from dr. came back high. Did round of penicillin and then went back on the mino. Added clarythromycin a couple days per week to deal with the strep which has been lurking. 2 months with a lot of changes but except for skin itch that started with the penicillin, I was pain free. Then it started creeping in…but I figured with all the changes I was bound to herx although I have never herxed badly, a day or two of amped up pain and then improvements. I uped my detox efforts and prepared to wait it out. 2 months later-June 2017- I was a mess. Hands and feet were useless and all my joints were on fire. I did a wash out for a week and 2 days in I was pain free. When the week was up I took 100mgs mino in the pm and woke up with pain in every single joint in my body. At this time I had no dr, ap or otherwise as Our small northern Canadian town is experiencing dr shortages. Thinking I was hypersensitive with all these changes I gave it another week and switched back to milder doxy. I did great on the doxy no herxing but I experience horrible sun sensitivity on it. In November I thought I would start slowly introducing the mino back…previously I’d been doing mino bid everyday. I took 100 mgs mino and super sore gave it a few days and dropped it to 50 and still sore but continued on. Felt like I was experiencing less pain as the weeks went on and I kept at it. In January it was getting to be to much and I took a wash out, oddly felt great almost right away. Being a glutton for punishment I decreased my mino dosing and started again. Pain, headaches everything came right back. March I took another wash out and instant relief again. At this point I finally gave up. I now wonder if it could be DILE…within 12 hours of a pill I’m frozen right up. After a weeks wash out and already feeling better I went back to the doxy. For the first 2 months my punished parts started to heal- I was able to wear my rings again. Then a month ago my fingers and toes have started to swell-off came my wedding band. My morning stiffness is back with a vengeance and the healing parts have plateaued. I started a short course of pred for the first time. Could I have DILE on the doxy too? Wondering if I should drop that as well…I’ve made an app. with Dr.C in Vancouver, thanks to the RBF dr list, but not sure if I can continue in this state until then….I do have a clarithromycin script but a little nervous to make changes now….so I’m wondering if this sounds like DILE to the mino and doxy? Could I have caused the mino reaction by not waiting long enough for stabilization before trying the penicillin? Should I have taken a greater wash out period between the mino and doxy? Any input would be so appreciated! Kristie
Kristie, I am one of the rare schmucks who has experienced DILE after 10 months on minocycline and reaching RA remission in both labs and symptoms. Man, was that upsetting! Your story sounds exactly like mine. DILE crept up on me and, after washouts, the reaction came on within 6-10 hours. I was wracked in pain all over. My very experienced, brilliant Lyme doc (internal medicine with background in rheumatology, immunology, and microbiology/Yale residency) felt it was a combo of DILE and a serum-sickness-like reaction. He sent me to an immunologist for a full lab workup and it was confirmed – previously negative ANA was then positive 1:1280 (homogenous), plus a positive anti-histone AB and positive single-stranded anti-DNA (double-stranded anti-DNA confirms true lupus). I also fell back on doxy and was able to use it for a couple years until I started feeling the DILE creep up again and switched to tetracycline and clarithromycin in combo. Have been okay so far on this combo.
In your situation, it would be wise to get labs run asap so you can confirm whether or not this is DILE or something else. Do you have any immunologists in your locale? The reason it’s important to get tested is because people who do suffer from DILE (believe to be due to slow acetylation) tend to also develop it with other medications. Due to Lyme, I wound up with a toxic goiter and the surgeon didn’t want to use anti-thyroid meds due to the risk they pose for DILE. Also, I had to stop a beta-blocker I was put on for heart palps due to the toxic goiter, because even the beta-blocker caused DILE! There are numerous different classes of meds that can cause it, including, the commonly-used rheumatic meds, such as sulphasalazine, penicillamine, and even the newer biologics carry side-effect warnings for those with first-degree relatives with MS (I do) and also for “lupus-like” symptoms.
I hope something here might help, Kristie. None of us here are medical professionals, so we can’t really say if what you’re experiencing is DILE and even doctors find it to be a rare occurrence and a challenge to identify and diagnose. I was just very lucky to be seeing a great Lyme doc who had experience in the medical fields relevant to me. This is why an immunologist/allergist might be a helpful type of doc to find answers, which may be useful to you in future, if you do indeed have a propensity for DILE. If so, it would be good to become informed on the types of meds that can cause it, so you can be aware of what to avoid.
Oh Maz, you are so much help! I am so sorry for all your struggles with Lyme and DILE. I So appreciate your kindness and big brain to pick;)
Yes,I hear you! Very upsetting to have remission snatched away…and yet again. Mino and doxy have worked so well- 6 years of remission.
I didn’t take my doxy today because my intentions were to try a washout and kill some inflammation with the prednisone for a week. Then retrial. Would you know how long it takes your blood work to normalize after DILE? Hopefully stopping it a few days before blood tests won’t effect the outcome…I’ll ask my dr for tests on Monday. I see now labs would be a much wiser way to figure this out. As for an immunologist/allergist, I’d be put on a minimum 3 month waiting list, but I could certainly request and then have my labs sent. Looking forward to my appointment with Dr.C in Vancouver.
I had a hard time finding out if doxy caused DILE….is there a good website you recommend to help figure out which meds to avoid? I’m glad to hear there’s hope for tetracycline and clarithromycin…really don’t want to let this therapy go. Especially if my choices are going to be more limited now.
Thank you so much, KristieHi Kristie,
Could I have DILE on the doxy too?
Perhaps, but it seems very unlikely. Apparently, as far as the medical profession is concerned, only minocycline can cause DILE. And I have not found any published, documented cases of DILE caused by doxcycline. However, doxcycline has caused a flare (in at least one case) of pre-existing subacute cutaneous lupus erythematosus (SCLE).
My guess is that something else is going on, but it’s hard to say what that might be. Switching to clarithromycin to see how you do on it does seem like a good idea.
Some references:
Comparative safety of tetracycline, minocycline, and doxycycline.
https://www.ncbi.nlm.nih.gov/pubmed/9382560Association or lack of association between tetracycline class antibiotics used for acne vulgaris and lupus erythematosus.
https://www.ncbi.nlm.nih.gov/pubmed/17596147Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinIn my experience, the evidence of DILE is really in the labs and symptoms. Kristie, I’m sorry not to respond quickly. We have suffered the loss of a dear family member. You will find some links in FAQ #17, but when my head is clearer, I’ll try to dig up some more, if needed.
Phil, thank you for your time! I appreciate you looking into that, I had a hard time finding DILE/doxy cases as well. Back in 2011 my labs came back negative for SLE, hopefully that covers the SCLE and that nothing’s changed since then. I share your opinion on the clarithromycin…just not sure how long to wait before introduction. If my choice of RA meds is shrinking I don’t want to make a mistake.
Maz, I’m so sorry to hear your sorrowful news 🙁 my condolences and well wishes! I feel touched you took the time to help me when your having a rough time too! I just wanted you to know I followed through on your advice- I got those labs run, asked for a referral and checked out FAQ 17- best list so far! Thank you for all you do for us here on the roadback! Prayers to you, Kristie
Hi Kristie,
Thank you for your patience and kind words!
In the scientific realm, there is a saying, “Absence of evidence is not evidence of absence.” This is true in cases where no attempt has been made to seek evidence. In other words, there may well be cases of doxy-induced DILE out there that just haven’t been documented or properly identified. Quite often we hear here that when someone is experiencing a symptom, it’s judged to be an allergy or intolerance, but no attempt is made to verify this. As minocycline, a later generation tetracycline, is viewed mostly as a more effective med and used prolifically for acne vulgaris, it may just be that arising symptoms startled prescribing docs when young ones developed these and so more in-depth study was attempted. That’s just my lay perspective, of course.
Here are a couple more links – the list is pretty extensive, including penicillin, cipro, cefuroxime, tetracycline, NSAIDs (ibuprophen and Diclofenac), statins, anti-thyroid meds, heart and BP meds, estrogen/BCPs, quinine (hydroxychoroquinine?) as well as commonly-used rheumatic meds. Here’s the rub – different sites argue that statins, for example, don’t cause DILE. So who is right (or maybe more appropo, who is the source of the opinion/study)? Secondarily, most lists are incomplete, because it’s not completely known which drugs cause it – some are just suspected of causing it (likely due to the odd case report and speculation). Some websites also list double-stranded anti-DNA as confirmation of DILE, but that lab is directly associated with real lupus, whereas single-stranded anti-DNA (in the absence of double-stranded anti-DNA), tends to be positive with DILE. So, even trusted sources may document some things inaccurately. Equally possible is that some drugs known to cause DILE may in fact lead to a temporary elevation of the real lupus marker, but this can only be confirmed if the offending med is withdrawn and the lab normalizes. It is odd, however, that confirmed lupus patients can and do use minocycline or doxycycline, but as they tend to be more sensitive to any meds, just have to be lighter in dosing. Confused yet?
So far, this is about the most complete list I can find and there may be better ones out there, Kristie, but it may be helpful for your future reference if your labs return with a strong suspicion of DILE and you need to exercise caution in future.
Thank you Maz!
I like the quote! Makes perfect sense! Thank you for the great list! I will be keeping that and adding to it. I was surprised to see ibuprofen and more antibiotics on there! Super crummy!
I’m really glad you encouraged me to get the labs done! Im to chicken to retrial the doxy after so many months of pain! I’ll be surprised if this isn’t DILE though as I’m feeling better off the doxy.
Is my understanding correct? A person who has DILE tendencies can take DILE causing drugs but should be hyper aware in case it starts to develop? But best to choose alternatives when possible and still be aware as many drugs have yet to be DILE associated?
I understand we aren’t medical professionals here so just for comparison purposes and to share with my doc- How long did your specialist have you wait until they switched you to another antibiotic? I’m thinking I’ll ask to go on the clarithromycin and stay away from tetracycline for now. Maz, I also wondered if your Biaxin dosing is because of Lyme? My dr also prescribed 500mg bid but studies I found for RA, it was dosed once a day…does my dose seem high? Possibly something to discuss with my dr? I better request a different NSAID in light of the DILE info as well…
I’m sure I had some more questions but it’s hard to focus with noisy children rampaging through my house!
Thank you so much Maz! You are so enlightening!kristie wrote:
Thank you Maz!
I like the quote! Makes perfect sense! Thank you for the great list! I will be keeping that and adding to it. I was surprised to see ibuprofen and more antibiotics on there! Super crummy!Yes, very crummy! Agh!
I’m really glad you encouraged me to get the labs done! Im to chicken to retrial the doxy after so many months of pain! I’ll be surprised if this isn’t DILE though as I’m feeling better off the doxy.
That’s worth noting in your diary, Kristie, because if your labs come back normal, what you’re experiencing may just be “good ol’” (really “bad ol’”) hypersensitivity, requiring a dosage adjustment.
Is my understanding correct? A person who has DILE tendencies can take DILE causing drugs but should be hyper aware in case it starts to develop? But best to choose alternatives when possible and still be aware as many drugs have yet to be DILE associated?
This is really something for you to decide with a prescribing doctor, but when one knows they are vulnerable to DILE, it just makes good sense to choose an alternate medication when available. E.g., there are 3 different classes of BP meds (they are dubbed the ABCs of BP meds), including ACE-inhibitors, beta-blockers, and calcium channel blockers. So, as I know I can’t use beta-blockers, I’d ask to use one of the others. I didn’t know if I’d get DILE from an anti-thyroid med, but as there is a warning for this on the label, the surgeon advised against doing this and decided surgery was the ideal solution for my sick thyroid.
I understand we aren’t medical professionals here so just for comparison purposes and to share with my doc- How long did your specialist have you wait until they switched you to another antibiotic?
I got tested for DILE within 2 weeks of stopping minocycline. I waited a further 2 weeks to see the immunologist who did more thorough testing. I then saw my LLMD 2 weeks after this and he said it would be okay to try doxy. So, about 6 weeks in total, I think (it was back in 2009). It took about 2 or 3 more years before I developed DILE (symptoms with lab confirmation) with doxy. The next med to cause a problem was chloroquine (plaquenil), then the beta-blocker. So, it’s just something to inform docs about in advance when being asked about allergies to anything. DILE isn’t exactly an allergy, it’s more how a person metabolizes medications (slow acetylation).
I’m thinking I’ll ask to go on the clarithromycin and stay away from tetracycline for now.
Sounds like you have a plan, Kristie. It can take up to 2 years for a DILE-induced ANA to come down, but the anti-histone ABs and SS anti-DNA normalize within weeks to months after the offending med is withdrawn. Also, don’t forget there are other classes of antibiotics – for example, the nitroimidazoles (e.g., tinidazole or flagyl) that are used in the CPn Help protocols. In those protocols, these are added to macrolides in a stepped, complimentary combination fashion.
One thing of note is that one cannot use systemic anti-fungals (e.g., Diflucan/fluconazole) or naturopathic anti-fungals that also block the P450 cytochrome (e.g., grapefruit seed extract) while on clarithromycin (can cause liver probs).
Maz, I also wondered if your Biaxin dosing is because of Lyme?
Yes, it is as per my signature.
My dr also prescribed 500mg bid but studies I found for RA, it was dosed once a day…does my dose seem high? Possibly something to discuss with my dr?
I think you may mean some of the clarithromycin studies for RA that are listed here? If you check these studies out, you’ll find different protocol doses are used.
It really depends which study you’re looking at, because in all scientific research, the study Method is designed to reduce variables, so each study participant will take the same medication in a particular arm of the study, at the same dose. In a different arm of the same study, the group may use a different or the same antibiotic at a different dose. Control group arms of a study will take a placebo, in placebo-controlled trials. The way Dr. Brown treated individual patients was to titrate dose to patient tolerance and he would test for bugs and treat accordingly. In some instances, he used only a penicillin. In other cases, he may have used low dose mino/doxy (and before these second generation antibiotics, the first generation, tetracycline). I don’t know if your AP doc is experienced or not, Kristie, so this can affect how one is dosed, and you’re right that it’s best to discuss this with your doc.
I better request a different NSAID in light of the DILE info as well…
I’m sure I had some more questions but it’s hard to focus with noisy children rampaging through my house!
Thank you so much Maz! You are so enlightening!Not much help, I’m afraid – can only offer general stuff I’ve accumulated over the years from personal experience.
Did you get your labs back yet, Kristie?
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