I'm an ordinary clinical rheumatologist. Not an academic, not a researcher, just a run-of-the-mill rheumatologist who practices what I hope is good, standard rheumatology. This practice does not include treating scleroderma patients with antibiotics. Should it?
After a post of mine bemoaning the lack of treatment options for scleroderma patients, my site was deluged by visitors and commentors originating from a group I had not heard of before, the Road Back foundation. In respect to scleroderma, and I believe other diseases, the group believes that antibiotics, an in particular, minocycline, are an unrecognized, underused, but highly effective treament. The comments have ranged from the informative, to the pleading, to the accusatory.
From what the commenters and their links have provided, I think the major points are:
- Dr D Trentham, from Boston, published a research letter in The Lancet in 1998 where he showed that 4 of 11 patients were in complete remission after 1 year of minocycline treatment. 2 others improved and 5 did not complete the study.
- Since the publication of the study, many (?hundreds) have received the same treatment with great success.
-Minocycline is still not an accepted treatment because, among other things, doctors prefer using expensive new drugs, and no studies are being done on minocycline because, being past patent, there is no financial advantage in studying it. Other doctors are just ignorant.
I'm going to have to rebut a few of these claims here, but we'll return to whether I should be using antibiotics further on. First of all, minocycline is a very interesting molecule. It pops up in rheumatology all the time, not really for it's antibiotic properties, but because it does seem to have some immune modulating activity as well as metalloproteinase inhibition, which might be useful in preventing cartilage damage. It also causes drug induced lupus, immunomodulation gone bad. So rheumatologists are not put off by the suggestion that minocycline might be useful, and in fact there was a period in the early nineties when, following a few positive studies, that we, me included, gave it a try. It didn't work, or at least, didn't work nearly as well as methotrexate, hydroxchloroquine and other drugs.
The study by Trentham, you must admit, was tiny by any standards. Eleven patients, five of whom didn't finish. Two stopped because of a scleroderma renal crisis. Yikes. Of the six that finished, however, four were considered to be in complete remission. Interesting. Two really bad results and four really good. Doesn't matter though because the study was so small it doesn't really mean anything. Here, commenters have suggested that no further research has been done because big pharma isn't interested, and doctors prefer studying new, profitable drugs. This may be true in some areas, but not for scleroderma. Two of the biggest, more recent studies in the area have been with methotrexate and cyclophosphamide. These are old-timer drugs. No money to mine here. Even more interesting is the fact that there has been further research into minocycline treatment, using the exact same protocol. This study was small as well, only 36 patients, and it too was not controlled. It had 12 patients drop out, ten because of worsening disease and found no significant improvement in the others. ( I could not find this article on the Road Back website) I didn't find any further, better studies, but this is understandable. Scleroderma is a very rare disease and if it is to be studied, most patients have to be registered in a few select studies. Given the above two studies, I gather the trail did not look promising enough to go further.
So in summary, doctors are not averse to minocycline, use it when studies support it, have in fact studied it in scleroderma even though there was no financial gain in doing so, and have not been impressed.
So what am I to make of the many testimonials claiming improvement and cure with minocycline? I'm not sure. I'm certainly intrigued. I would love for it too be true, as would all rheumatologists, but why does only one rheumatologist continue to promote it. There have been other stories of stubborn scientists with whacky ideas that have subsequently proven true, think H pylori or prions, but why haven't we seen more evidence coming out of Boston if there are so many dramatic results. Until rheumatologists, scientists all, see something more substantial than the Lancet study, minocycline will probably remain nothing more than a very interesting molecule.
PS: If anyone is aware of more data, published or not, coming from Dr Trentham's work, I'm all ears.
