Alopecia UK
 
News Media About us

Donate

 
Getting involvedAbout alopeciaSupport & adviceTreatments & wigsResearchForum

  FAQ FAQ  Forum Search   Register Register  Login Login


My experience and response

 Post Reply Post Reply Page  12>
Author
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Topic: My experience and response
    Posted: 27/October/2016 at 1:46pm
Hi
I had AA then AU, for over 20 yrs. I have, like others, always wondered what my trigger the auto-immunity. There are many small indications in the published literature that fungal infection might trigger the process, a candidate fungus being Alternaria [ see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543859/ ]
There are no clinical trials of anti-fungals, and my hypoethisis would be that it is a superficial infection, rather than a systemic one, and hence could be treated at the surface.
From time to time I have had tiny amounts of vellous re-growth which never lasts. When I had some re-growth about 20 months ago, I started using topical antifungals. I use a small amount of ketoconazole shampoo - about 1cc rubbed onto my head and face, and left in contact for 1-2 mins then rinsed off. I started doing this twice a week, now I do it each night in the bath. I also spray a little terbinafine 2% aqueous spra onto my face, eyebrows, and scapl, and rub it in. Again, was twice a week, now about 4x a week when I remember. The result has been about 60% re-growth of hair on my scalp, about 40% beard re-growth, and about 70% eyebrow re-growth. Lower lid lashes have re-grown, none on uper lids as yet. During the 20 months there have been 2 periods of localised hair loss in my scalp, and these have re-grown. There has been no regrowth of body hair ( I do not treat except my head).
Now, i have absolutely no idea if this is a chance experience. However, hair regrowth in AU is very rare, and none has regrown in my case except in the areas I am treating.
I am posting here not as a snakeoil merchant - we have all seen too many of these - but in case someone else wants to try this method, in case they can repeat my experience. if they can then we are on to something for sure...
Note, there are no published trials of antifungals in AA/AT/AU.
Also note the antifingals I mention are available at high-street chemists without prescription, and will not break the bank. I estimate the cost is about 30p a day.
G2

 
Back to Top
Sponsored Links
False

Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 27/October/2016 at 1:51pm
I should add that prior to the above I have of course gone through all the heartache of trying all known remdies, but I gave up every attempt about 10+ years ago, and I have been taking no other treatment during the 20 months period I describe above.
Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 18/December/2016 at 12:10pm
Thought I'd update on my trial of treatment. Now 22 months and counting. Still using the topical ketoconazole shampoo and the topical terbinafine spray, roughly 4 times a week; I have about 60% of hair on my head and similar amount on eyebrows; fine but complete set of lower lid lashes; a few more hairs slowly appearing here and there, e.g. in my ears and nose, and nothing falling out yet. Below my head, there's not a hair in sight. I'll keep you posted from time to time.
Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 25/March/2017 at 11:12am
Update from me - all still OK.
To re-cap: I've now had now 25 months of re-growth on my head, eyebrows, eyelashes, and beard area. I am delighted with this, after >20 yrs of alopecia universalis. The re-growth is not dense enough to be called completely normal, but I don't look like an alopecian any more, just a bloke who shaves his head fairly close.
I continue to use ketoconazole shampoo [I rub about 1cc on whole head/face; leave for 2 mins; rinse off] plus a few spritzes of terbinafine 2% aqueous spray. This is all available over-the-counter and is cheap.
And voila!
My life is different to what it was, now. Even after 20 yrs I still felt awful about having AU, still hated having my photo taken, still had vivid dreams about hair... I feel much happier now.
I am fairly sure that in some cases [and in my own case] fungal colonization starts the auto-immune attack [molecular mimicry?]. It seems that by determinedly keeping fungal colonization off my head and face, my immune system has relaxed a bit. On the rest of my body, where I use no topical antifungal treatment, there is not a single hair.
Now, I am not naive and this may yet all fall out. But so far, so good.
Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 11/May/2017 at 6:39pm
Update from me - all still OK. Now >26 months of re-growth; progress not rapid, but nothing has fallen out; gradually new hairs are being seen - most recently my eyebrows are getting bushier, more hair on my temples, and two [so far!] lashes on my R upper eyelid. Hair that was pale has darkened.  

As I indicated above, my theory is that the auto-immune attack on the follicles may conceivably be maintained by the presence of common environmental fungi, e.g. Alternaria species. There is evidence that fungal infection may be present at the start of AA  - certainly the patchy nature of AA does resemble ringworm, but the immune system is so effective that no fungi are seen once the AA/AT/AU is established.

 So my strategy is to let my immune system relax by keeping superficial fungal colonisation at bay. I'm using ketoconazole (Nizoral) shampoo rubbed in, left for 2 mins, and rinsed off, followed by ~10 spritzes of terbinafine aqueous spray (Lamisil).
So far so good - after 20 yrs of AU when not a hair was seen, now I need to shave my face stubble daily and use a buzz cut on my head each few days. It may yet fall out, I am a realist - but this has been a sustained success for me. Not a single hair has appeared on my body, so it's not that my immune system generally has given up attacking hair - its only on my head and face that there's re-growth. Only reason I am posting all this is not to make anyone feel bad, but to see if anyone can replicate my experience. 
I reckon if someone tried it and saw nothing by 4-6 months it could be abandoned, but I wouldn't give up before 4 months.


Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 15/June/2017 at 6:12pm
Update from me - all still OK. >27 months of re-growth, so far so good.
Back to Top
Mr.man1 View Drop Down
Newbie
Newbie


Joined: 15/July/2017
Location: Scotland
Points: 1
Post Options Post Options   Quote Mr.man1 Quote  Post ReplyReply Direct Link To This Post Posted: 18/July/2017 at 10:18pm
That's great G2! Glad it's working out for you. 
Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 18/August/2017 at 10:34am
Summary: 29 months into re-growth after 20+ years of AU.
Still using ketoconazole [Nizoral, etc] and terbinafine aqueous spray [Lamisil etc] topically, most days each week. 
Got the warning signs of scalp burning as if I may be getting a relapse... a couple of smallish AA patches appeared at the back, but have not got bigger last 2 weeks. 
Eyebrows continue to improve. Now a few lashes on both upper lids. 
Fingers crossed... I am not naive and hope this lasts...
Back to Top
Scotty View Drop Down
Newbie
Newbie


Joined: 05/June/2008
Location: United Kingdom
Points: 8
Post Options Post Options   Quote Scotty Quote  Post ReplyReply Direct Link To This Post Posted: 04/September/2017 at 3:02pm
Hi G2,

Your hypotheses about anti-fungals is interesting. I've often wondered if there is a connection.

Keep us posted !

 
Back to Top
Scotty View Drop Down
Newbie
Newbie


Joined: 05/June/2008
Location: United Kingdom
Points: 8
Post Options Post Options   Quote Scotty Quote  Post ReplyReply Direct Link To This Post Posted: 09/September/2017 at 3:05am
G2,

Did you (or do you) have any other symptoms of a fungal infections that may correlate to your prior AU ? ... e.g. Toe-nail fungal infections
Back to Top
Jen View Drop Down
Newbie
Newbie


Joined: 23/August/2017
Location: Chester
Points: 5
Post Options Post Options   Quote Jen Quote  Post ReplyReply Direct Link To This Post Posted: 22/September/2017 at 2:54pm
What's the update?    Is everything going well still?  
Back to Top
Guest 2 View Drop Down
Super Member
Super Member


Joined: 13/May/2005
Location: UK
Points: 498
Post Options Post Options   Quote Guest 2 Quote  Post ReplyReply Direct Link To This Post Posted: 06/October/2017 at 3:45pm
Hi
Yup, all going well still. I had a couple of small patches of hair loss at the back and though "oh-oh, this is it - it'll all go, now" - but it didn't spread and the patches are filling in with hair again.
My head hair is not thick enough to grow long, and anyway I don't want to tempt fate, so I buzz cut my head every few days. So I look like a "shaved-head guy" and not an "AU guy", which suits me. I shave my face daily - a fairly sparse beard but it's there. Eyebrows sparse but easily noticeable. On lower lids - many fine lashes; scanty fine lashes on upper lids. 
But below my chin: absolutely nothing, not a single hair, nothing on neck/body/armpits/privates. 
Plan:
As well as continuing the ketoconazole shampoo and terbinafine spray, as I describe above, I am going to try using minoxidil 5% mousse because minoxidil has a good track record in promoting hair growth in non-AA/AT/AU people. I reckon if the auto-immune reaction has been switched off by eliminating surface fungal colonisation, minoxidil has at least a chance to work.
Will post progress from time to time. Would be v interested if anyone else tries and succeeds. If it's just me then it's just a fluke.
Back to Top
 Post Reply Post Reply Page  12>

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 10.03
Copyright ©2001-2011 Web Wiz Ltd.

Stay involved

Instagram Support us while you shop online with Raise money for Alopecia UK

Alopecia UK is a registered charity number 1111304
All content is © Alopecia UK 2017
Site by Jellymould Creative with C4 Multimedia

Visit our ebay store

Generously supported by the British Association of Dermatologists

Contact us | Membership | Suppliers directory | Privacy | Accessibility | Terms & Conditions


 

AUK

Alopecia UK is a registered charity number 1111304 and Scottish registered charity SCO44702
All content is © Alopecia UK 2017

Site by Jellymould Creative with C4 Multimedia