Folliculitus Decalvans

I was diagnosed with Folliculitus (folliculitis) Decalvans (Scalp only) several years ago, I have been taking Minocin for about 5 years which seems to slow down the process of the hair loss and fungal infection. However my scalp does flare up on regular occasions and I have broken skin which is sore and I treat this with an antibiotic cream that seems to make the skin heal leaving a scar from the lost follicles. This seems to be an ever decreasing circle!!
My doctor seems to think that the condition will 'burn itself out' if I take Minocin for long enough, but the condition is extremely frustrating!. I do have scaring in quite a few places on my scalp but I am fairly lucky that my hair is quite thick which does cover a lot of it, however, in order to have corrective surgery to treat the scaring an/or transplant other follicles to these areas my doctor has said that the folliculitus (folliculitis) has to be dormant for at least a year.
Is it common for this condition to last as long as it has?
Can you recommend other web sites or centres where I could perhaps gain a better understanding and also learn more about the treatment of this condition?
Do you have any suggestions please?
Regards,
Andy.

[Alan Rockoff, MD]

Andy:

The treatment and advice your doctor has given you is correct, including the likelihood that the condition will "burn itself out" -- that is, become inactive and leave a non-inflamed scar.  You might ask him or her whether, in addition to antibiotics, injections of cortisone might be worth considering from time to time to quiet down acute inflammation.

There is very little known about this rare condition.  Bacteria grow from the pustules, but no one really knows whether they cause the condition ro appear later as bystanders.  My hefty new textbook, which runs to 3,000 pages, devotes one paragraph to this disease.

I appreciate your frustration with your condition and with our collective ignorance about it, but time is on your side, and you are indeed fortunate that you can comb over it and thus minimize its cosmetic impact until definitive surgery can at least be contemplated.

Best.

Dr. Rockoff

[Thedon]

Hi, I went to a Trichologist who diagnosed me with having Folliculitis Decalvans, when you say yours flares up what do
you experience, My scalp at the crown is scaly & gets red, is  
that what you call the fungal infection.I have not yet experienced scars, but I do notice a bit more shedding - hair loss. Have you had any side effects with taking the antibiotics for 5 years.
Thanks Don.

[Hellish]

Make sure you go to a doctor and request a lab to test your scalp.  My husband went to a Trichologist and was diagnosed as having Foliculitous.   We ended up going to a doctor and had hair and scalp samples taken at a lab.  End result it wasn

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A related discussion, folliculitus (folliculitis) pus was started.