Congrats PJ! That is great news!

PJ, I'm so excited for you!  It's just the kind of good news we all need to hear.

Did anyone else see the Today Show this morning regarding research in cloning hair follicles?  It's in the experimental stage (with rodents), but it sounds hopeful.  Transplanted cells clump together & cause the skin to grow new hair follicles.  I'm wondering if this might be an option when the ffa is no longer active.   

PJ, this is the best news ever. Congratulations. Break out the best champagne.  My derm said that FFA is irreversible so this is pleasantly surprising.  So what did you eat and drink and what other treatments turned your luck around?

So happy for you PJ!  Very exciting to hear that your hair is coming back!  Please let us know if you took anything besides steroid shots.

I first noticed hair loss around 2008. I was officially diagnosed Aug 2012 with FFA & LPP. My treatment was very conservative.  I was told in the beginning that once hair was gone it would not grow back. Later I was told I was in early stages/mild case of FFA and the hair follicles weren't completely destroyed so hair might grow back. I started out getting the steroid injections, rotating between Head & Shoulders Classic shampoo and DHS Zinc shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. Now I use Ketaconizole shampoo instead of DHS Zinc, otherwise hair regiment is the same.  I think I did a total of 4 rounds of steroid injections. I was on Doxycline for 4 months (Feb-June 2013) I did not change anything with food/drink. I just have been trying to eat healthier in general (which I'm not good at). I color my hair every 5-6 weeks. Almost forgot I did use Clobetasol foam once in awhile - not on a regular basis. I did use it day before and day after hair coloring.   I do not have any eyebrow hair regrowth. I'm using Elidel cream on the eyebrows. I am to continue with what I am doing and go back to Derm Dr in 3-4 months. I'm also seeing her to deal with my rosacea. I do believe the steroid injections are a very important part of the treatment and getting treatment started right away. I know I am lucky because I have a milder case than what it sounds like a lot of you have. I didn't get a chance to ask her if I will have to continue treating my hair/scalp the same way forever or if I can use other hair products.  I think I will be afraid to stray from this treatment for fear my hair will start falling out again. One other thing, I tried to not let FFA consume my life. Sure I had my bad moments, but I really tried to keep it in perspective and carry on in life. Everyone around me was very supportive and did not make a big deal out of it either.  I am afraid though when I go back in 3-4 months the Dr might look at my scalp and decide it's still active. For now, I'm not going to worry about it.

So everyone - just be good to yourself!

April - I do wash my hair everyday alternating the shampoos. I was told from the beginning that it is important to wash your hair everyday to keep follicles clear of any residue, etc.  Once in awhile I will take a week off from these shampoos and use my "normal" shampoo which is Matrix Biolage Delicate Care. My Dr took me off of DHS Zinc because she thought I might be having a reaction (itchiness/redness) to it after using it for a few months. The ketoconizol was just something else to try, not sure if it has made any difference or not. I did develop some dents from the injections. One that took 9-10 months to go away. I did not notice the doxycycline helping with my hairloss or scalp. It did help with my dry eyes and face. She prefers to not have  you take any oral meds if possible.  Hope someone else has this news to share soon!

I agree with PJ's doctor regarding  hair follicles that haven't been severely damaged growing new hair.  I've been able to regrow some hair  with the use of Rogaine.  I've had the best results on the right side side of my face where the ffa didn't start as early.

I'm curious how many women on this site have had steroid injections, and if they think it has helped.  I was diagnosed in March, 2013, have seen 3 doctors, and not one ever mentioned the option of steroid injections.

I forgot to mention with the shampoos, you need to leave them on your head for 3-5 minutes. Also, do not rub the conditioner into your scalp. Just in case it has something to do with my hair, I have been taking a multi vitamin, fish oil, vitamin D, blood pressure meds and potassium. I have been taking these for a long time and none of which were prescribed because of my hairloss.

Hey Everyone, I think I need some advice.  I am worried about these injections.  They seem to have helped others on here, but others not so much.  I had one round of the injections about 2 1/2 months ago.  These shots caused a dent in my forehead which I believe is starting to fill in a bit thankfully. I also believe they caused increased shedding of hair.  I refused another round of shots last time I saw my derm because of this.  He said these shots do not cause hair loss and that I should continue with the shots because it is the only thing that will really help.  I am not going to do oral meds, at least for the time being.  Currently I am receiving UV excimer laser therapy which has reduced the red, inflamed appearance of my scalp greatly.  I believe it may be slowing down but not stopping my hair loss.  I am also following a Paleo diet  and using a shampoo with tea tree and peppermint oil as well taking turmeric. I may try the shampoo that PJ had success with.  I'm not sure what else I can try medically other than the shots, since I am not doing oral meds.  I have an appt. for a second opinion with another doctor and I am seeing a different provider at my derms office on Tuesday.  Not sure if I should continue with the shots or not??

April this is such a hard decision for us all... As you say the steriod injections work for some ladies and not for others... I am having very mixed emotions about whether to try these injections or not.  I am very worried about the dents they can leave... I am using oral meds (plaquenil) and I want to give the doxycycline a go next time I see my derm.  I guess if you are not using oral meds then the shots might be worth continuing with, you could also back them up by using the steriod lotion dermovate and some of the ladies are using regaine (also marketed as rogaine) to see if that helps.  You are certainly well informed and doing everything you can with your diet and supplements to help heal yourself.  XXX

Debs, I guess I will have to decide soon whether to try them or not.  Keep me posted if you decide to try them and if they are working.  Thanks!!

Hello all.  I am seeing Dr Harries  on Thursday morning.  I hope to be cured this time by Friday.  If there are any new questions anyone may have - I will happily ask him.  Looking forward to a little retail therapy afterwards in The Trafford Centre.  On the subject of injections, I didn't have them the last time as Dr Harries felt my skin was still recovering from the previous ones.  I am not planning to have them this trip as I still have a long ridge at my hairline plus a few dents.  Fortunately my fringe still covers them. x

I have just bought the new book by Dr Joel Furhman 'Eat to Live Cookbook', he has just released a revised copy this month.  Very easy to follow recipes that are suitable for those of use trying to use diet to help our FFA.  I am not a good cook and even I can get my head round this. XX

I have been wondering about injections too. I am going to see Dr Harries next week (shame its not the same time as you Celia - we could have done Trafford therapy together!  My husband is not so keen to accompany me to that!!). Seriously, I am very interested in hearing how you get on, and any other tips for me about different treatments that I should discuss with him that I have not already tried.

http://experiencelife.com/article/questionable-food-combos/

I'm a pretty healthy eater but this article was eye opening. It talks about food combining and how some combinations can lead to inflammation. This just touches the surface but I found it helpful. 

April, yes this is part of the anti-inflammatory diet advice given by Dr Andrew Weil and Dr Joel Furhman... please check  out their online websites and they list exactly what you can eat to help auto immune conditions.  I have been following this dietary advice since July, my FFA is still active but slower but my overall health is very good and I have dropped over one dress size - whilst eating more food than usual!  Also check out the Joe Cross website 'reboot with Joe Cross' he is auto immune and has basically cured his skin complaint with diet.

Hi everyone. Am I alone in being on a regime of oral steroids ( prednisolone +Azathioprine) as well as plaquenil and steroid gel. My dermatologist is not the most communicative person and I'm concerned that I am having very unpleasant side effects with questionable results. I have lost a patch about the size of a large egg in ten months and have new inflammation creeping ever onwards. I've also prescribed myself turmeric.

I've not been offered injections .

UK BASED LADIES

CARF (the USA based cicatrical alopecia research foundation) are holding their 1st patient support group meeting Sat 16 November in London at the British Association of Dermatologist HQ.  (FFA is a type of cicatrical alpocia)

I am going to attend.  If anyone else is up for it just email to book your place:

londonsupportgroup@carfintl.org

Dee, I have not been prescribed oral steroids by my doctor, but he did mention that I should call to schedule an appointment as soon as possible if I have a flareup or my shedding increases so he could prescribe a short-term round to get it under control as soon as possible.  

Hi everyone, just wanted to give an update on my latest Dr appt. My new dermatologist had gotten my old dr's records and prescribed Plaquenil to me last month. After 10 days I developed an itchy red rash all over my body and was advised to stop taking the Plaquenil, so now that is off the table for me. I saw him Tuesday and he looked through my hair and saw there is a lot of inflammation, itchy redness and flaky scalp. He did a biopsy in 2 places and I will go back in 2 weeks to get the stitches out, and hopefully get the results of the biopsy. He thinks I may have LLP rather than FFA, but to me they seem to be pretty similar. Most of my hair loss is at the forehead and temples.  I feel it has receded more this past summer and getting harder to cover up. He mentioned another med, an anti-inflammatory, but I can't remember the name. He may prescribe that later.

On the subject of injections, my previous derm gave me 4-5 rounds of steroid shots into the front of my scalp a few years ago, and I feel the hair loss got much worse after that, so it didn't help me. I like my new derm much better and he seems much more interested in getting to the bottom of this.  I'm trying to be hopeful!

Hi Ladies, saw my derm yesterday.  Been taking plaquenil twice a day for 8 months.  Hair loss has slowed to about half what it was before but still active.  Derm has now added doxycline twice a day in addition to the plaquenil.  I go back in 6 months. 

Steriod injections:  discussed using them, I asked questions about the dents they can cause.  Derm said dents caused if injections not done properly.  I asked if they go away with time.... answer is NO, dents are permenant... I have decided not to risk further disfigurement to my scalp.

Have a good weekend.

Mandy, check out www.drfurhman.com  www.drweil.com  www.rebootwithjoe.com

Hi Debs, I, too, had injections 2 times 2 years apart.  Both times my head dented and both times it has returned to normal.  Also, be careful with the doxycycline as it can be hard on your stomach.  Make sure to take it with food, and you might want to consider taking a probiotic at the same time because along with the bad bactieria, it also kills the good bacteria in your stomach.  I had a lot of stomach aches with it and found it somewhat hard to take.  That's why I switched to minocycline which worked just as well for me as doxy, but seemed to be easier on my stomach.  However, I have digestive issues as well so maybe it was just me. :-) 

Hello.   Just reading comments concerning fish oil.  I'm trying to follow the autoimmune protocol by Dr. Furhman.  Also joined his member center and asked advice regarding FFA.   One of the doctors responded advising fish oil due to PPAR agonist properties - similar to diabetic drugs.   don't understand the science, but thought it was worth a try.  When I asked how much,  the answer I got was 2,000-3,000 mg of EPA - to try it for 3 months to see if it makes a difference.  If not, to discontinue.  

I had to stop taking hydroxychloroquine because I was getting frequent migraines.  Been off about 3.5 weeks and still getting migraines.  Saw my GP yesterday and we agreed it wasn't the hydroxychloroquine so I will see if I can get back on it and give that a try.

Looked at dream hair blending site and it says its out of stock until after November 15th! It does look amazing in the claims it makes.

I can`t see how it would attach to cover the sides and front hairline though, as it appears to be a system which uses your existing hair, to pull through a net to add the new hair piece.

Ann thanks for that info... I will try it too.  thanks ladies with reassurance that the dents do fill in after injections... if the doxycyline doesn't work I may have to try the steriod injections as a last resort.   I am going to use a probiotic whilst on the doxycline to after reading all your advice.  thanks v much. XXX

Debs, I have been on Doxycycline, taking it at dinner and have taken a good strong probiotic @ bed as I was told at health food store to keep those 2 apart . Anyway, no stomach problems.

Rita thanks for that info.  I have taken my 4th dose of doxycycline tonight and so far no tummy probs.  However  I will be defiinately going to the health food shop tomorrow to get a probiotic as we are going to be on this drug for several months so we do need to be extra careful.

I took doxy for years for another condition. Be sure to drink plenty of water with it.

I don't know whether this is helpful but for what it's worth............

I'm not too concerned about what's happening with the scalp (prescribed local medication/shampoo) but I've been trying to improve my autoimmune system as I also suffer with arthritis and psoriasis.  To this end, I've been seeing a Chinese practitioner for acupuncture and pills to sort out my gut.  He's also given me an 'instrument' which looks like a long flexible pipe with seven sharp pins at the end.  I have to use it to  whack my head (not where I've lost hair but the bit between there and my crown) for 5 minutes on alternate days!!!  Sounds bizarre but Belinda Hale (eyebrow lady) was telling me that an FFA sufferer had successfully grown eyelashes following an eyelid tattoo and I've now got  a few hairs growing on my eyebrows following a tattoo.  Perhaps it's something to do with stimulating the skin and with no other tried and tested solutions in the offing I'm going to continue with the 'Chinese torture'.  It's only been 3 weeks so far and I'll obviously share any results (ever the optimist) with you lovely FFA sufferers.

Ever hopeful - Jean

Jean... this does actually make sense to me... after I had my eyebrows tattooed I have not lost any more hair from my eyebrows... I did not regrow any but the hair loss in this area has halted... this is one of the reasons I got my eyelash enhancements done back in June this year, I was hoping to trigger the same effect... touch wood and my eyelashes have not remained stable since I had the tattoo in this area.  I have heard of this from other people too.  I can only think the action of the tattoo needle somehow stimulates extra cellular activity which prevents hair loss.... whatever it is I would definately recommend trying it. 

Interesting !  We are all trying to stay healthy and eat all the right things, and as Jean said 'improve auto-immune systems' .  I am going to ask a dumb question now...............why are we offered drugs to suppress the auto-immune system on the premise that it is the AI system that is attacking healthy hair follicles and destroying them so that they scar over.  I was offered ACTOS but declined as it can, in suppressing the AI system, leave the user less likely to fight infection, that is just one side effect that may happen. 

Celia, I think the problem is that our autoimmune systems are in overdrive, which isn't healthy.  Something has caused our autoimmune systems to overreact and attack our own bodies.  I've been healthy my entire life and taken good care of myself by exercising and eating healthy.  I do have seasonal allergies, but I've never been sick other than an occasional cold or flu.  My doctor said it shows God has a sense of humor.

Annie - that is absolutely right - of that I am sure.  My system went into overdrive almost 3 years ago when I was battling with pneumonia.  I am certain that I absolutely know this was the cause. I was so ill and eventually had to shuffle around using a zimmer frame, so thin and weak.  3 weeks before all of that I was playing squash, swimming gyming and cycling.  How to correct it is the BIG question.  At the moment most of us are on various cocktails of treatment and we must accept that the medics have not come up with a 'cure' rather they are doing as much as they can by trying different meds - it is difficult to know whether meds are working or whether any changes in the condition would have happened anyway. In other words - 'shots in the dark'.  The only treatment I can be sure of is the topical kind - ie dermovate / clobetasol.  This does 'dampen down' the redness, but I don't really have a clue if hydroxychloroquine or any antibiotics work.  This frustrating situation is what we are all trying to get our heads around.  My hairloss continues despite treatment and this is the case for many of you.  Apologies for 'going on' a bit - sometimes monologues feel a bit self-indulgent but good to be able to sound off on this forum. x