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

I really believe this is stress related.  Every time i have been under extreme emotional or physical stress my temples have receded and my hair has thinned.  It always grew back but not as thick.  Since i had surgically induced menopause in 1998 its gotten worse.  I also developed horrible allergies in 1992.  Thats when my doctor thinks i developed lupus.  Its a puzzle.

I have just looked into          Treatment for FFA    on the internet  - there was an interesting youtube video (8 mins) that may be worth watching - (cancel the ad at the beginning !)   

Hi Mandy - just type in  Treatment for FFA, it is the 5th article and there is a box on it with blue writing on - FFA - hope you find it. x

I agree that the severity of this disease is stress-related.  My scalp was calm at my July visit with my doctor, then a death in the family caused a painful flareup in early September.  My scalp is just beginning to calm down two months later.  All the drugs in the world can't combat stress, but my doctor did say that he thought the flareup would have been much worse if I hadn't been taking Plaquenil.  He also told me to call him immediately if I have another flareup so he could prescribe short term steroids to shorten the severity and duration.

Ooooooops - blond moment ! http://youtu.be/0lLeXr9J93Q   this is the link and it's about reversing your autoimmune disorder......... x

Polly, you went through an awful time with a combination of events and serious ill health on top of it all. As you rightly say, the stress you suffered during those years seems likely to have been the trigger for developing FFA.  Thank you for sharing this with us. I'm glad you've been able to come out of that dark period in your life and enjoy life once again. This disease definitely seems to be related to stress, and also linked with ill health when the immune system becomes damaged.

Some years ago I developed IBS and was prescribed medication to alleviate the symptoms.  At the time my GP did not give me any dietary advice but I am definitely gluten intolerant as I have a flare up if I eat anything containing gluten. If I pay attention to my diet I do not need to take any medication.

Hello Everyone,   I saw a new dermatologist last night.  Thankfully, she trained with an expert on scarring alopecia, so she was extremely informative.  However, she told me after looking at my scalp that I have both FFA and LPP.  Of course I do.  Doesn't that beat all!   I explained that in September my scalp became extremely inflamed and when it finally calmed down I had lost patches of hair.  She told me to call her immediately if that happens again so that she can do injections to reduce the inflammation as quickly as possible. 

So, I just restarted hydroxychloroquine, she gave me injections last night, and I continue to use clobetasol solution and shampoo.

I am attending a seminar on Sunday.  Will let you all know if I learn any more than we already know.

ann

Hi All,

I'm wondering if anyone has had the same experience as I'm having.  I was having trouble with Clobetesol irritating my scalp, so my doctor switched me to Bethamethasone topical 2 times daily.  I have been using it for three weeks, and the redness on my scalp has almost completely disappeared.  I don't know if it's the new topical that made the difference or if the plaquenil I've been taking for 4 months is finally starting to work.  My problem is that even though my scalp looks much better, it's still very tender when I style my hair or the wind blows it around.  I guess I expected that when I got the redness under control, the pain would subside.   Can anyone tell me at what point my scalp should stop being painful? 

Hi All!  I watched the Youtube video about autoimmune disorders and digestive issues - leaky gut syndrome.  I have been diagnosed with IBS and have had pretty bad digestive issues for some time.  I have been toying with changing my diet, but haven't done it yet because it seems too difficult right now since I have a husband and 3 kids.  Preparing separate meals for myself always seemed a bit daunting.  However, after doing some research on "leaky gut", I think I am going to give my diet a much needed overhaul.  I just read the book "Digestive Health with REAL Food" by Agalee Jacob.  It does an amazing job of explaining all sorts of digestive issues and the link with autoimmune disorders.  So, here we go.  Will let you know how it goes.  It would be nice to feel better and help both my issues - digestive and FFA.  I'll keep you posted. 

Does anyone know if it is okay to have flu injection I usually have it every year but I'm worried it may compromise my immune system? I wondered if anyone has mentioned to their derm. as I did read something a long time ago regarding side effects?! best wished Sammi

I have had pneumonia in the past. so always get a flu shot.  My thinking is that I'd rather give my immune something "real" to fight, instead of my hair. 

I think the triggers for this disease are different for everyone. For me, the flu shot always makes me have a big hair shed. I had Influenza, BAD, in 2006...and afterwards, started to notice a bit of thinning around my temples. The next year, I decided to get my first flu shot (2007), and that was my first MAJOR hair shed...lost most of the hair from my right temple. Then, nothing for a year. The following year, 2008, got another flu shot and lost most of the hair from my left temple area and the rest of my right...then nothing for the rest of that year. I got one final flu shot in 2009, and that is when I started noticing a lot of thinning around the top of my hairline. I have not had a flu shot since on the recommendation of my endocrinologist. She believes that is my trigger...or, at least, one of them. I am going to see an immunologist in a few weeks to discuss this with him...and also to find out about the Shingles vaccine. I'd like to get it, but am so scared that I will have no hair left.  Ugh. Again, I think this all varies from person to person though.

I saw Dr Harries last week, who prescribed doxycycline antibiotic for me, two tablets twice a day, as well as keeping on taking the Hydroxychloroquine, plus Dermovate scalp solution, as it is stronger than the Synalar gel which I have previously been using. Feel fairly depressed that I am just taking more and more drugs, and the hair loss doesn`t seem to have improved at all. Now I am scared that if I stop them it could get worse!

Interestingly I also went to see a trichologist locally in Evesham, Sally-Anne Tarver, who says she is seeing more and more patients with this condition - she says that she reckons it is far more common than people think. We also discussed the possibility of laser hair treatment for this condition -  it could perhaps be a suitable topical treatment - has anyone had any experience of this?

Pam, I am seeing Dr Harries and I am using exactly the same drugs as you.  I am taking both the doxycycline and hydroxy for 6 months then have to go back to be reassessed.

Flu jab - I did ask about this.  I was told that it is OK to have a flu jab with these drugs.... BUT I have decided I am not going to have the flu jab because I don't want to stimulate my immune system as it is in overdrive already.  I am also not going to renew other vaccinations when they lapse ... I will have a few essentials but the ones I keep up to date in case I travel to tropical destinations I will not renew.   For the past 20 years I have kept all my vaccinations up to date and this has been everything; yellow fever, typhoid, diptheria, hepatitus etc.. so I think my immune systems needs a rest especially  now I am autoimmune.

Welcome to newcomer Betty.  Sorry you have FFA, but we hope you will find this forum helpful to you.  I wonder what your story is, I couldn't find you anywhere - I hope you're able to navigate this - it isn't difficult and if you read back ( there's loads !) there is a lot of information that might be of use to you.  Best wishes.

CARF MEETING

3 dermatologists attended

Dr Christos Tziotzios is doing a research project and needs our DNA.   He will send you a kit to your home for a saliva sample. Please email him for kit christos.tziotzios@kcl.ac.uk

He said that FFA is now an epidemic in the UK. 

Aim of treatment: 1 stop inflammation

                              2 control disease activity

Drugs:

Antibiotics; doxycycline, ciprofloxacin, rifampicin, lymecycline

Steroids; scalp injections, oral - prednisolone, topical - dermovate, etrivex shampoo

Hydroxychloroquine sulphate

Roaccutane - usually used on acne but can be used on scarring alopecias if pustular 

Minoxidil - regaine/rogaine.  increases blood supply and shifts hair into a growth phase.  Foam is best causes less irritation.  Must use every day for 6 months to see a difference.  

Pioglitazones; diabetic drug, used in USA for lichen planopilaris.  Slight risk of bladder cancer

Laser - LLLT low level laser therapy.  6 - 9 months to see a result. Activates hair growth stage.  Not on NHS.  One woman at meeting uses a helmet 25 mins every other day.  Make is IGROW you can buy on internet.

PRP platelet rich plasma - already in use for other alopecias.  Derms said think it would work for FFA.  You take some of your blood, remove plasma, inject the plasma into scalp.

Food: derms agreed that sugary  foods promoted inflammation in their acne patients and did think the diet plays a part however the medical profession has not carried out any studies on diet!  Sugar, dairy and alcohol we things many of the ladies knew from experience to trigger inflammation.

Cloning techniques

www.replicel.com see carf website there is a link to a video

www.histogen.com

Microneedle rollers - concept that slight injury promotes hair growth.  Already proven as areas that are tattooed often retain/regrow hair. Nanogen company are retailing this product n 2014.

Hair simulation tattoo - short strokes representing hair that can fill in gaps and create an illusion of hair density. www.looklikeme.com live in 2014 will give details of tattooing for aloecpia.

Hair transplants - when this is done with FFA it can trigger the FFA to reactivite, so not recommended.

Causes: genetic predispositon plus environmental factors. 

Lots of research is going on.

Although there are no new drugs to try some of us might want to look at the microneedle rollers, laser helmet, PRP.

Again ladies please do contact Dr Tziotzios and donate saliva for his DNA research.