sallylwess what is clobetasol?  is it an oral steroid?  I wonder if I should ask my derm for an oral steroid....

Jess, clobetasol is a topical cream that contains a steroid.  It is a foam that is put on your scalp and it is supposed to reduce the inflammation which is supposed to help with the burning, itching and discomfort in your scalp.

Any new ladies on here??? I have typed up a fact sheet on FFA to save you the time/effort of reading back over our past posts... please send me a 'friend' request so that we can exchange emails and I can send you the fact sheet as an attachment.

Brilliant idea, Debs, well done ! x

Fact Sheet - yes I would like one please!  Brilliant idea. To give to my local derm as well, also local trichologist and skin/hair clniic. They all say they are seeing more of the condition, and would like more information. I think that the more we make people aware of FFA the better, and the higher the chance of some research being done into why it occurs, and what can be done about it.

Thank you Carol for that info - I wasn't aware of some of that but it is good to know that things are beginning to happen !

Debs - great idea about the fact sheet.  I'd very much like one, please.  Have sent you a friend request.

Debs, I would love your fact sheet too (have sent you a friend request). Thank you so much! I have tried so many different treatments over the last year, and seen many doctors in the States, the UK and France. If useful for you all, I will happily summarize everything I have tried...

Catherine, I for one, would be very interested in the treatments you've tried and length of time you tried each as well as the country you received the prescription from.  I am sure we would all very much appreciate this information, please and thanks.

Hi Rita, Of course, I will be most happy to. I really have tried so many different options and seen numerous doctors, some of which have published a lot on LPP (I have two forms of LPP: FFA as well as the 'classic' LPP elsewhere on my head; my FFA is most obvious and active). It has been such a journey. I am travelling at the moment but will write a detailed account of all the treatments I have tried, length of treatment etc.,  as soon as I am back home in London in a few weeks. It is not a happy ending unfortunately as nothing so far has seemed to work...

Debs, I would also love to see your fact sheet! I think I sent you a friend request...or at least I tried :). I have a call set up with Dr. T on Thursday...so hopefully can be part of the research! Thank you!

Hey All, I'm wondering if anyone knows of a doctor in the Denver area that specializes in FFA.  My sister who lives in Portland was diagnosed 2 years ago.  I think I have FFA as well as my hair is receding.  

has anyone that tried the oral steroid prednisolone felt that it made a difference?

I'm not sure how to reply to Deb directly about the FFA fact sheet you have developed but I would appreciate a copy.  Thanks very much for putting it together, Brooke (brooke@peak.org)

Hi. Tomorrow I have an appointment with Dr T at Guys hospital. He has asked to see me, my mum (who also has FFA) and my son. I'll let you all know how we get on.

Jess I took the oral steroid prednisolone. It's difficult to say if it made any difference because there is no particular pattern to this condition but it did make my skin lovely which led me to believe that it probably minimizes any inflammation in/on the body.

xx

ET, you can get a list of dermatologists in your area via the CARF website. Good luck!

Thanks Pam, I have put the CARF website details on the factsheet, it is really intended to point people to the right places online with website addresses etc.. plus info I have got from ladies on this site and derms I have spoken to.  It is a starting point for new ladies.  CARF is a fantastic resource and their London patient meeting last month was terrific.

debs-007@tiscali.co.uk

Please drop me an email and I will send a factsheet to give you website addresses and an overview on FFA, drug and non-drug options, tattooing, wigs - where to buy, how to wash/cut them etc..

Hi,

I've been reading the comments and I'm behind the curve.  Who is Dr. T?  It might be interesting to get into this study and my sister and I both have FFA.  I'm getting tested but it's pretty obvious.  Also how would I get a copy of the fact sheet.  Thanks for your help.  I don't even know if I'm posting my questions in the right area.

Asking our derms to use all possible treatment options.

Lasers - I believe that the hospital I attend for FFA, Salford Royal, has a laser machine.  On the hospital's webiste it says that one of the derms  Dr Janice Ferguson is doing research using lasers on another condition (scleroderma).  However laser treatment is not offered to FFA patients at this hospital.  Any ladies that are due to see the derms at Salford Royal may like to elect to try laser treament.  I have only just become aware that the hospital has laser equipment. 

ET I have emailled you at your private email addrress.  It would be fantastic if you could be involved in Dr Christos Tziotzios research at Guy's hospital London.  His details are in the factsheet I have sent you. 

could any of you tell me the dosage of the doxycycline that you are prescribed, please

I was on 100mg twice a day.  After a couple of weeks my tummy was painful and sore.  My GP asked me to get advice from my derm what to do.  Dr Harries has asked me to reduce my dose of doxycycline and see how I go then increase it again ... or I can try a different tetracycline antiboitic and see if another one doesn't give me side effects.  So right now I am taking 100mg once a day.

Re Doxycycline: I too, was warned of stomach aches prior to taking this med.      I knew I had to take a strong Probiotic and so I did and no issues that way.If interested, got 'Ultimate flora critical care 50 billion Extra strgth probiotic'. This particular one says relieves digestive discomfort. I took 1 @ day at least 2 hrs away fr. Doxy as suggested.

I saw my derm last week.  She agreed that the inflammation and hair loss were much worse.  She did the injections again in my hairline but i declined to have my eyebrows injected again.  She told me my options were prednisolone or CelCept.  I told her that i had read on this site about doxycycline being prescribed.  So I'm on 100 mg doxy twice a day.  I'm just down and depressed.  My bangs have thinned so much that i can't hide the FFA anymore.

Brenda - sorry you are feeling so down.  It is sometimes very hard to cope with and we all understand and empathise.  Are you using clobetasol too as a cream on the hairline ? Are you trying turmeric capsules to help with the inflammation ? I didn't get on with the doxycycline and now take lymecycline which is given to acne sufferers.  Not sure if it works yet.  Have you read the fact sheet that Debs has compiled ?

Polly - I have been taking the lymecycline for a month now - no side effects.

Incidentally,  was told by my GP that regular liver and kidney function tests are unnecessary for hydroxychloroquine, but that the eye monitoring is important.

Hi everyone, I just found this article on Medline that talks about a drug called Cetirizine for scarring alopecia.  In the study 18 out of 21 people were helped by this drug. 

The title is: Therapeutic hotline. Effectiveness of the association of cetirizine and topical steroids in lichen planus pilaris--an open-label clinical trial.

Here is the abstract:

Lichen planus is considered a T cell-mediated immunological disease. Even mast cells may contribute to the pathogenesis of the disease. Keratinocytes of the basal layer of the skin and/or the hair follicle may represent the "target/victim" of an immune aggression, determining the destruction of the hair follicle and thus scarring alopecia. Therefore, there is a compelling urgency for effective treatment of this potentially disfiguring dermatosis. Our data provide a further therapeutic opportunity: the use of an antihistaminic drug--cetirizine (CTZ)--in an "anti-inflammatory" regimen. We propose the use of CTZ at the dosage of 30 mg/daily. Twenty-one patients affected by lichen planus pilaris (LPP) of the scalp have been treated. Topical application of steroids has been coadministered in all cases during the therapy. Clinical effects, in the sense of stabilization with cessation of the inflammation (erythema, follicular hyperkeratosis, loss of anagen hair), were achieved in all patients but three. One patient developed cardiac arrhythmia after 3 months of successful treatment and dropped out. Our cases indicate that a combined therapy of topical steroid with CTZ can be a safe and effective choice even in severe cases of lichen planus pilaris, so often refractory to the therapy.

I am going to ask about it at my next derm appt. The drug is an anti-histamine.  I have been doing some reading about something called mast cell activation disorder, which is a variant of mastocystosis, and scarring alopecia.  I found another article that links the two.  It is related to allergies, histamine and the immune system, although I am not sure I completely understand how it all works.  Anyhow, thought I would share.  : )

Thank you for all of that information April! This is really interesting stuff! While my scalp is not red or itchy, my skin sometimes is...especially on my arms and torso. I get welts when I scratch (Urticaria)...some days my skin feels very sensitive and itchy and other days, nothing. I was taking a Claritan (anti-histamine) once a day for a long time because of it. Now that I think about it, my hair loss seemed to be stabilized during that time period. This makes me wonder if I should go back on it. 

Thanks for the boost Celia.  I'm trying to look at the bright side.  I've been taking plaquenil for about two years.  I use clobetasol solution and desonate gel.  I'm taking turmeric, biotin, vit D, and Viviscal.  I wash my hair with zinc shampoo and use free and clear conditioner.  What April posted makes sense.  All of my blood tests show basophils, monocytes, and esonophils sky high.  I understand that these are allergy markers.  I'm going to call my derm now and ask for ceterizine.

l

I believe that Cetirizine is available over the counter....at least in the U.S. as Zyrtec.

I didn't realize Zyrtec was cetirizine!  Maddy, I have intense itching on my scalp, torso, and legs but no rash.  I also have sensitive skin and get hives very easily.  I have terrible weird reactions to tons of foods, medications and supplements.  I can go on with my long and pathetic list of symptoms...Anyhow, hoping to try to get to the bottom of this: )

Cetirizine sounds like another tool we can use to treat our FFA... Any ladies seeing their derms soon can you ask please about this ?

I am finding the discussion on allergies quite interesting.  I am making so many links to my own history.  I can't take Zyrtec, but do take Allegra.  I am going to begin taking allergy shots soon.  My allergies and hair loss went into high drive when we moved a year ago.  We moved to an area where I am surrounded by things I am allergic to.  I can't take benadryl or prednisone.  I have heart arrhythmia which is aggravated by many allergy medications.  

When I started Flecainide for the arrhythmia, I broke out in rashes, saw great hair loss, had nausea, and even began experiencing attacks of pancreatic pain.  When I was told I had chronic pancreatitis, and I was having acute stomach pain, and esophageal problems, and my hair changed color from silver gray to nearly black, I quit the Flecianide.  My rashes, pancreatic pain, nausea, and my esophageal problems went away.  I am not currently experiencing much hair loss, and my hair is becoming silver again.  

Also, my levels of inflammation are down in blood work.  

I actually was diagnosed with FFA by a biopsy in April of 2013.  That month I also quit taking the heart medication.  (My doctor gave me permission, but not her blessing.)  I am doing better with the arrhythmia also.

I am thinking of trying the Paleo diet to see if it helps with my inflammation. Before I invest in any books though I would like to ask if it is a diet which a vegetarian could follow?

I took a Zyrtec yesterday and today.  Last night i noticed that my scalp wasnt itching as bad as it had been in the last two months.  Today there isnt any itching and the inflammation isnt as bad.  I'm keeping my fingers crossed and will keep on taking Zyrtec.

Liz, check out Dr Joel Furhmans diet advice and Dr Andrew Weil.  Dr Furhman is a more restrictive approach but is virtually vegan, his auto-immune protocol is on the internet.  I have downloaded it but can't transfer it to this site because there is a small fee (I think it was about £7) and it is not possible to send as an attachment. 

Pam, the study was from 2010

I received a letter from Dr. Caroline Mann from the School of Medicine at Washington University in St. Louis, MO.   She's the Principal Investigator in Dermatology that's doing a study of FFA.  Since i'm being treated for FFA at Washington U I'm being asked to participate in the study.  I have to fill out a survey and await further word.  I'm also going to let her know about our group and Alopecia World.

Hi Brenda, great news that you are going to see Dr Mann and she is leading FFA research, can you let us know what she thinks about using the Zyrtec for FFA.. and if so how much do we take a day? for how long? and is it safe to take with our other drugs like hydroxychloroquine sulphate and tetracycline antiboitics  ?

Brenda, I live in Missouri, approximately four hours from Washington University in St Louis.  I would be willing to participate in the study if more participants are needed. 

I'm awaiting word from Dr. Mann.  Just mailed the survey form to her today.  I listed my meds and included zyrtec.  When i hear from her i will let you know what she says about zyrtec and if she needs more participants.  I dont know if i will be able to see her in person.  My derm is Dr. Musiek at Washington University.  The zyrtec has stopped my itching.