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.

Hi All,  Just wondering how those using the Dermaroller are getting along.  Are you using it on the areas where the ffa is active?  I think those areas would be too painful for me to tolerate it at present.

Also, for those taking Zyrtec:  How much are you taking each day, and how are you tolerating it?  Are you taking it along with the oral meds prescribed by the doctor?

Thanks in advance for sharing.  I so appreciate everyone who shares their experiences.

Annie, 'yes' I use it on the first 2 inches of my hairline, so basically the next bit of my hair that is going to disappear!!!! I don't get any pain from my FFA so it is OK for me to do but I can appreciate for those ladies that have painful scalps the dermrollers would be a problem.  I only use it 2/3 times a week as you are supposed to let your scalp heal in between rolling (or needling as I like to call it).  This is just one of many methods we are using to try and control our FFA, if you are unable to use it Annie please don't worry, it is just one of several options that I and other ladies are pursuing.  

Hi All, Just a note for those (including myself) thinking about using Zyrtec.  The side effects listed include a small chance of liver damage.  I'm definitely going to ask my derm at my 3 month appointment in January since I'm currently taking Plaquenil, which can also cause liver damage.

Debs, thanks for your information regarding the Dermaroller.  You are such a blessing!  It might be something for me to consider in the future.  I can tell that my scalp is very slowly getting better.  I noticed this morning that it no longer hurts when I put my sunglasses on - a small thing, but a blessing nonetheless.

My doctor also ordered blood work me after being on Plaquenil for one month, then again at three months.  I've been taking it for five months, and my blood work has been normal so far. 

I posted on Dec 5th that my GP categorically said that liver and kidney function tests are unnecessary with regard to using Plaquenil but that vision monitoring IS.  I was told by the secretary to my dermatologist that the results of blood tests done automatically go to my GP.  I asked the GP to check and there were no results.  I have requested copies of the test results from the derm as I would like to see for myself how the process works.  My GP had liver and kidney function tests done for me anyway and the results were fine, but I have asked for a printout of these.  I guess I just feel more confident if I know what is going on.

I saw cetirizine in the chemist at around £7 for a month's supply.  It's available on Amazon for just over £1.  I am going to try this even if it means dropping the anti-biotic I am taking. 

Brenda, how are you getting along with the zyrtec? I haven't tried it yet but did try claritin, another antihistamine that my husband takes for allergies. It seemed to help the itchy scalp but made my eyes, nose snd mouth very dry, which seems worse than the itching. I've also had the same problem with benedryl, when I tried using it for sleep. I'm wondering if zyrtec is different than these others.

Hi Celia, Do you have to drop the antibiotic if you start taking the cetirizine? I am considering to start on it too, but I am also on Doxy, and don't see my dermatologist until late January.  Thank you, Maddy

Hi MJ, I do not have any scalp irritation either...just the hair loss. I think the theory behind the Cetirizine is that this is some form of allergic reaction that makes our autoimmune system go haywire...something along those lines. I'm sure someone else can explain that a bit better :). 

I am wondering the exact same thing MJ! I have some Claritan sitting here on my desk! The study that everyone is referring to happened to study Zrytec...but that's all I know.

Alice, zyrtec has stopped the itching but it does cause my mouth to be dry.  I didnt have itching until a couple of months ago and it was driving me crazy.  I sip on water often to alleviate the dryness.  I take zyrtec, plaquenil, and doxycycline as prescribed by my dr.  I have to have my eyes checked twice a year while on plaquenil.  My eye dr gave me a chart to check my eyes each day but ive been on plaquenil so long that i forget to do it.  I was taking plaquenil for lupus a long time before i was diagnosed with FFA.  I have blood work done twice a year. 

I just took my first zyrtec - fingers crossed that you guys are on to something here! Also, has anybody had their heavy metal levels checked?  I just had mine tested and my mercury and lead are high.  My mercury is actually quite high (and I don't eat seafood or have any fillings) not sure if it could be from fish oil I am now taking but my holistic doctor seems it may just be from a lifetime of exposure.  Anyway, I read that mercury could lead to autoimmune issues so I would love to be able to get rid of it and get rid of this problem although once the FA is triggered, not sure if it will go away if the mercury is gone.  Just throwing this out there in case there in the event anyone had something similar and/or wanted to check their levels in case it is a potential cause.  Belated thanks to Debs!  I will send you an email as well.

Sam that is a very interesting idea about mercury.  I had my teeth filled at a young age (5 years) because I was prescribed tetracycline antiboitics to trea ifant peunomia this damages childrens growing teeth (not us now as adults), so I have been exposed to mercuy in fillings and I do eat lots of fish.  I wish the derms would give us all blood tests to see what our bodies are doing and test us for everything possible and see what we have in common and how we differ from the general population.

Hi All,

Regarding antihistamines:  I have seasonal allergies and have taken a generic version of Claritin year-round for several years. I wondered if it might interfere with the plaquenil, so I stopped taking it mid August when my seasonal allergies lessened.  I experienced my worst flareup ever in early September.  I'm wondering if antihistamines in general may lessen the severity of ffa.  Has anyone's doctor said if it's okay to take Zyrtec & Plaquenil together since both list liver damage as a side effect?   

I can't find anything referring to liver damage as a side effect of cetirizine - very young children are given this and also lymecycline.  I think probably any existing liver/kidney probs may be exacerbated by using these drugs.

Christmas soon ! Amazon have e mailed me to say the cetirizine is on it's way !

I dont think zyrtec causes any liver problems.  My 9 year old granddaughter was prescribed it.  My doctor prescribed it and he knows im on plaquenil.

Just received my DNA sampling kit from Dr Tziotzios.  I thought it was an unexpected Christmas present until I opened it!   I'll send it away tomorrow and hope it doesn't get delayed because of the holiday coming up.  

Yes, my present turned out to be a saliva sampling test! It does seem a bad time to put things in the post, with Christmas coming up next week!