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Comment by April on December 6, 2013 at 10:02am

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.  : )

Comment by Celia on December 5, 2013 at 6:24pm

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.

Comment by Brenda, IL US on December 5, 2013 at 4:01pm

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.

Comment by Rita - Canada on December 5, 2013 at 10:12am

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.

Comment by Polly UK on December 5, 2013 at 9:59am

Hi all, I've just been prescribed Lymecycline 408mg capsules for one month by my derm. He said it's to help with the inflammatory flare ups I'm still getting and to take it alongside Hydroxychloroquine. The individual follicles are less inflamed and hair loss has slowed (dare I say it!). He prescribed Lymecycline instead of Doxycycline but I don't know why? Has anyone else any experience of Lymecycline. I was hoping for Prednisolone because it always helps with my Asthma inflammation but that's usually no more than a week's course and my derm is totally against prescribing steroids for long term use.
Debs - many thanks for your excellent fact sheet, I have stored it and will add to it as more info is available!
Also thanks PamW and others for all the extra info from chats with Dr T. My inflammation is also lower in the mornings and when it's bad is always later in the day. I've had asthma attacks in the middle of the night and my peak flow is usually better earlier in the day so that makes good sense.

Comment by Debs on December 5, 2013 at 9:38am

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.

Comment by Rita - Canada on December 5, 2013 at 9:29am

Jess, i was on 100 mg. Doxycycline every day for several months, am currently on same dose but every other day.

Comment by jess on December 5, 2013 at 9:16am

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

 

Comment by Debs on December 5, 2013 at 2:31am

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. 

Comment by Debs on December 5, 2013 at 2:17am

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. 

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