Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Hi Valarmie, From what I understand of the Mayes Minocycline in Scleroderma study, the study was badly flawed. Apparently, Mayes is a sclero specialist in TX and is pretty negative about minocycline for sclero, but there is a patient of hers on RBF (sorry, can't remember her name) who is actually on minocyclie and is doing very well - go figure! Also, if you connect with _SD on RBF, she is a statistical analyst and will be able to explain to you how/why the study was flawed. There may even be a past discussion thread you can search out on the RBF forum, if memory serves where explained this. As for DILE (drug-induced lupus erythematosus from minocycline, I have actually experienced this after 6 months use of minocycline in low, pulsed doses. I had actually reached remission on pulsed minocycline 100mg twice a day on a Mon, Wed, Fri (in addition to azithromycin 250mg Tues/Thurs) after 16 months of use. The symptoms began to creep in slowly with increased migrating pain and swollen joints. At first, I thought I was plateauing out and I'd have to switch my protocol, but I did wonder about DILE, so I took a break and, almost as soon as I stopped the mino, my symptoms resolved. DILE is extremely rare, is very easy to diagnose and resolves upon discontinuation of the offending drug (many drugs, other than minocycline can cause it), so it should not be a concern for anyone, as simple blood tests can be run to confirm whether it is DILE or not. These are anti-histone ABs, ANA (if previously negative) and SS Anti-DNA (single-stranded anti-DNA is the " fake " lupus test, whereas DS Anti-DNA, aka double-stranded anti-DNA, is used to diagnose real SLE). As mentioned DILE is very rare and they don't know why some people suffer from this disorder, though one theory is that these folk are " slow-acetylators. " That is, they are unable to break down certain drugs fast enough in the liver. However, my Lyme doctor also mentioned the same possibility in the study you posted...that normal apoptosis (cell death) is prevented and these zombie cells are then left to wreak havoc in the body. In either case, DILE is very easy to monitor while on minocycline with simple blood labs if anyone is concerned and is easy to resolve by switching out of minocycline to another tetracycline, like doxycycline. Also, very interestingly, some of the biologic drugs, like Enbrel and Humira, used for rheumatic diseases, carry a risk of DILE (see package insert) and may also induce MS in some folk, so the argument used by rheumies that minocycline is bad because of this is a little ironic, considering it takes a person a lot longer to get rid of one of those injectible drugs from the system than just stopping oral minocycline, if it should become a problem. Hope that helps, Valarmie? DILE from mino is really rare and, if you are worried, it can easily be monitored monthly with simple blood labs. Maz RA/Lyme .. Quote Link to comment Share on other sites More sharing options...
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