Re: Plaquenil / FD
If you read a lot of people's stories here you will see a reoccuring statement... This antibiodic worked at first then stopped...
In your situation I would seek a couple of opinions to make sure you are properly diagnosed. Maybe consider finding a specialist in your area (yes people specialize in conditions like ours)
Ok for the group - I have been looking and ready lots of medical papers on FD woot we have an abbreviation now lol... Anyway I have not found the paper Rot suggested on any of the databases but I'll keep digging...
Here is a snippet from a paper that was some interesting reading..
______________________________________________
Folliculitis Decalvans and Tufted Folliculitis Are Specific Infective Diseases That May Lead to Scarring, but Are Not a Subset of Central Centrifugal Scarring Alopecia
_____________________________________________
We would like to thank Drs Powell and Dawber for their thoughtful letter about our editorial. Perhaps the seeds of progress can be found among some of their comments. We would like to draw special attention to their third reference,1 which is useful reading for clinicians who are struggling with the treatment of inflammatory, scarring alopecia. In this referenced article, Drs Powell, Dawber, and Gatter describe 18 patients with inflammatory, scarring alopecia whose lesions were culture positive for S aureus. These patients had received no long-term benefit from multiple trials of antistaphylococcal
Antibiotics , but did respond to 1 or more prolonged (10-week) courses of treatment with rifampicin plus clindamycin. Patients remained free of recurrences for at least several months after cessation of treatment.
We have cared for patients with clindamycin-induced pseudomembranous enterocolitis, and so we view the combination of rifampicin and clindamycin with trepidation. Nevertheless, one of us (L.C.S.) has already placed a patient on this treatment regimen with gratifying short-term results. However, 1 month after completing a 10-week course of therapy, this patient's condition recrudesced.
Returning to the preceding letter by Drs Powell and Dawber, we think that the main thesis can be summarized by the claim that FD is "caused by a specific infection: Staphylococcus aureus. This is not merely a secondary infection." If this were true, then FD could justifiably be separated from other forms of scarring alopecia. But we have all been down this road many times before, and it has always led to a dead end. We have administered enough
Antibiotics to our patients with scarring alopecia to sterilize the Ganges river, and yet their scalp disease progresses. A culture that is positive for S aureus and a temporary response to
Antibiotics does not "prove" that a disease is caused by staphylococci. Patients with flares of atopic dermatitis invariably are culture positive for S aureus, and they dependably respond to antibiotics. But atopic dermatitis is not caused by S aureus, although the disease is certainly exacerbated by superinfection. Drs Powell and Dawber recognize that the combination of rifampicin and clindamycin may have anti-inflammatory and immunomodulating effects in addition to antimicrobial actions. Perhaps this is why the combination helped their 18 patients with FD.
For now, we stand by our statement that "the pustules of folliculitis decalvans are a manifestation of either bacterial superinfection or an intense immune response to degenerating follicular components."2 We restate this as a challenge to Drs Powell and Dawber, and to other investigators as well. Let them conduct the following prospective, double-blinded study. First, establish clinical criteria for FD. All patients fulfilling these criteria should be entered into the study. Fungal infection should be excluded, but bacterial cultures should be performed after entry into the study. (We suspect that some patients with "FD" will prove to be culture negative.) Then randomize the patients into 2 groups. One group should receive the rifampicin/clindamycin combination as well as a placebo topical medicament. The other would serve as a control group receiving prednisone (a short, tapering course), oral tetracycline, and a potent topical corticosteroid (our recipe for patients with "central, centrifugal scarring alopecia with pustules"). Nonresponders can be crossed over to the alternative regimen after 10 weeks or if their condition worsens. Drs Powell and Dawber would be ideal investigators for such a study because they have a good source of patients and sufficient comfort with the rifampicin/clindamycin regimen.
_________________________________________________
I have done rifampicin plus clindamycin too many times to count.. It helps for a bit but in the end the stuff comes back.. Currently, still shaving the area and treating by q-Tip with 91% rubbing alcohol twice daily has been the best control in 10+ years.. We still need to find something for the ladies though!!!!
Kizzy