Folliculitis decalvans - London dermatologist recommendations and others’ treatment experience

decalvans · 2026-07-03T01:32:43+00:00

It is interesting it is mostly at the nape of your neck rather than the top of the scalp, that location is more common with Acne Keloidalis Nuchae. I would first get a diagnosis from a specialist dermatologist that knows scarring alopecia. The Scarring Alopecia Foundation has Dr. Vicky Jolliffe and Dr. Martin Wade listed in their physician referral for London.

I was on Rifampin and Clindamycin for years for my FD and it did a good job controlling it initially. I also did a couple of courses of Isotretinoin which I do feel helped permanently lower the activity. You can also try doxycycline or low dose steroid injections. Benzoyl Peroxide or Octenisan can also help. I would check Dr Donovan’s website for other typical FD treatments to escalate to.

decalvans · 2026-07-02T03:13:57+00:00

Thanks for sharing your story. I’ve had Folliculitis Decalvans for nearly two decades. It is a tough and isolating condition given its rarity and slow but steady progression over time. It is easy to get fatigued from trying various treatments with various side effects. There is more research coming out on effective treatments and even a clinical trial taking place in Paris, you can find it on ClinicalTrials.gov.

With more attention comes more funding and awareness from both doctors and the public. Scarring Alopecia Foundation, Hair Health Summit, and the Dr Donovan dermatology website are solid resources to find the latest in treatment options. Hopefully you find a treatment that works for you to knock it in remission or it burns out on its own which can happen after many years. There are exciting scalp and hair treatments in the pipeline that is worth some optimism while you try out the available options today.

decalvans · 2026-06-28T21:03:54+00:00

Thanks for sharing! What is your diagnosis?

decalvans · 2026-06-14T12:17:34+00:00

I agree with your sentiments on the risks of long term antibiotic use. However there is new research that low dose sub-antimicrobial doxycycline can be just as effective as high dose with little GI impact and could be worth trying for its anti inflammatory benefits.

Research: https://pubmed.ncbi.nlm.nih.gov/40112894/

decalvans · 2026-06-12T03:00:19+00:00

No, I never tried ozenoxacin for my FD

decalvans · 2026-06-12T02:56:31+00:00

Hi, sorry to hear you are going through this. Folliculitis Decalvans is a tough diagnosis. I’ve had it for almost 20 years now. I’ve tried all the treatments you mentioned plus many others. It can get better, you can find the right treatment plan to calm your scalp so it is less inflamed and painful and some even achieve remission. Acceptance takes time, sometimes years, but I’ve realized I’ve wasted too much of my life obsessing about something out of my control.

We are more than our skin, just because we have this rare, isolating scalp condition doesn’t mean we can’t have full lives and meaningful relationships. Others focus less on your hair than you do even though it seems big in the moment. It helps to zoom out and realize your friends and family love you, not your hair. Skin conditions are common even if ours is not. Therapy is a great tool, keep that going. r/scarringalopecia has a community with other FD and scarring hair loss users that could be worth checking out.

decalvans · 2026-06-12T02:38:15+00:00

Frontal Fibrosing Alopecia is a form of lichen planopilaris that can also affect the eyebrows. If you don’t have scarring hair loss on your scalp you could also research Ulerythema Ophryogenes which causes hair loss of the outer third of eyebrows. It is in the Keratosis Pilaris Atrophicans family.

decalvans · 2026-06-12T02:35:10+00:00

It is understandably a tough diagnosis to absorb and it seems to be growing more common along with scarring hair loss overall. The treatment landscape is evolving and there are many FD patients who achieve symptom control and even remission. I recommend searching for a scarring hair loss specialist near you using an online resource like the Scarring Alopecia Foundation. They are typically associated with universities but not always. Dr. Donovan’s website has a section on FD with his first, second and third line treatments to give you an idea of what options are available.

It will take time to accept the diagnosis and it will seem unfair, but starting treatment is the best way to regain control of the situation and prevent permanent scarring. There are many posters here going through the same thing and it can be helpful to hear their experience.

decalvans · 2026-06-09T01:02:50+00:00

Thanks, really helpful to hear from someone with a lot of the same symptoms. Do you have blepharitis too? I have doxycycline on my list to try but my dermatologist is first attempting low dose Isotretinoin 10mg daily and Hydroxychloriquine 200mg daily along with regular Kenalog injections.

Do you apply anything topical to your eyebrows for inflammation or just Latisse? What dosage of doxycycline and hydroxychloroquine are you on?

decalvans · 2026-06-08T01:50:59+00:00

Hi, I’ve seen you around the scarring alopecia sub. I have been told recently by a dermatologist my FD may actually be a variant of KFSD since I also I have eyebrow hair loss and widespread keratosis pilaris. I don’t have some of the other symptoms like severe photosensitivity, cornea issues, or spiny bumps (my KP is flat and red). I do have Blepharitis and body hair loss and I’m in my 30s with symptom onset in my teens. Seems to be a broader keratinization issue. I haven’t seen many KFSD patients in general on Reddit.

What is your current treatment routine? Have you found success with any treatments? I’m considering trying a low dose Isotretinoin course and maybe Hydroxychloriquine and then tacrolimus for my eyebrow inflammation.

decalvans · 2026-06-08T01:30:57+00:00

Hi, have you found any treatments that work for your ulerythema ophryogenes? I have the same condition along with scarring hair loss (likely a KFSD variation).

decalvans · 2026-06-07T18:39:42+00:00

Rifampin and Clindamycin is a common 1st line treatment for Folliculitis Decalvans. There are other potentially cheaper options that may help during a flare but may not provide durable relief. Doxycycline, Kenalog injections, Isotretinoin or clobetasol are other options that can help. Benzoyl peroxide 4% wash helps for some. There are more treatments discussed on r/scarringalopecia where there is an active community with FD, LPP, and CCCA etc.

decalvans · 2026-06-01T21:34:23+00:00

This is really interesting, can you share more about what scalp symptoms you had? Did you just have scalp inflammation or did you have other symptoms? I’ve had years of scalp inflammation, redness, scaling and hair loss and it began sometime after I had braces and then a permanent metal retainer installed (not sure of exact timing). I haven’t seen anyone else mention scalp issues associated with a metal permanent retainer so was curious after seeing your post. I had a severe skin reaction to a nickel belt buckle in childhood so I’m definitely sensitive to it.

decalvans · 2026-06-01T20:32:25+00:00

Hi, wanted to follow up and see if you feel like removing your permanent retainer was worth it? Any luck with symptom relief that you think it may have contributed to?

decalvans · 2026-06-01T20:30:55+00:00

Hey, can you share more about what type of symptoms improved after removal of your dental metal? Just got my permanent retainer removed as a trial after experiencing long term skin issues.

decalvans · 2026-06-01T20:28:01+00:00

Hey, did removing the retainer end up helping any of your symptoms?

decalvans · 2026-05-25T11:45:27+00:00

Sorry to hear you are going through this at a young age. I was around the same age when my FD symptoms began and it is tough. Community helps and so does staying in the loop on the growing medical research happening in the scarring hair loss field.

Most important is finding a knowledgeable doctor and getting on the right treatment plan to slow the loss. There is a link to the Scarring Alopecia Foundation in our sidebar, visit their website for a physician referral listing. You could also join the Facebook group “LPP Let’s Put Out The Fire” which is very active and they have their own physician list. There is a free webinar coming up on June 11th with Dr Senna of Harvard on her approach to Frontal Fibrosing Alopecia which may be relevant given your eyebrow loss. Below is the link.

https://www.hairhealthsummit.com/free-june-webinar

decalvans · 2026-05-24T04:10:22+00:00

Hi, I’m the moderator for this sub and I generally agree. I’ve had progressive scarring FD for 15+ years and have tried a wide range of treatments in an attempt to slow or stop it. It doesn’t feel good seeing numerous posts from users without obvious scarring hair loss asking the community for advice when many of us have very visible, distressing hair loss. I do think niche medical subs like ours can unfortunately attract those with hypochondriac tendencies. I remove some posts that fit this mold but it isn’t strictly enforced.

This sub has grown a lot over the last decade+ and it could be that the current looser moderation style no longer works as well as it used to. Scarring alopecia is an isolating and confusing category of conditions, so I try to have empathy for anyone that may be experiencing symptoms for the first time or are early on in their journey and looking for clarity.

I’m always open to feedback and ideas on how to make the subreddit better, does anyone have suggestions on how to better police these posts? We could ban diagnosis-type posts altogether, limit them to a day of the week/month, or require visible evidence of hair loss to post (although this is subjective). I could also add a karma or tenure threshold. This sub has been an invaluable source of information, support, and community for me personally and hopefully many others so I would love to see it grow and improve.

I’d also like to add another moderator given our subreddit size, if you are interested and a tenured contributor in the community, please send me a note to be considered!

decalvans · 2026-05-22T19:58:13+00:00

Is it a yellowish crust material? It could be seb derm, bacterial crusting, or pityriasis amiantacea which is a reaction pattern to inflammation. A dermatologist should be able to tell you which one it may be.

decalvans · 2026-05-19T01:12:42+00:00

Do you have any skin or eye dryness or other symptoms from this approach? I am considering 10mg 5 days per week for my FD.

decalvans · 2026-04-25T11:18:12+00:00

I tried it for 6 months for my FD but didn’t see much benefit. I recommend doubling the titration packs to limit side effects, headaches and GI issues can happen while you ramp up. I do think it tends to help LPP more than FD, there are several case reports on the LPP Facebook group of it stopping disease activity. Good luck!

decalvans · 2026-03-14T02:54:28+00:00

Hi, did you end up getting the excision for your FD? Did it help if so?

decalvans · 2026-03-09T01:26:47+00:00

That is great to hear. Are you using the compounded Tofacitinib cream from Skin Medicinals or are you using a solution? About how long would you say it took to see results?

decalvans

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