Replies to This Discussion

Permalink Reply by Maggie on April 3, 2014 at 4:43pm

MJ Thanks for your reply - it is so supportive to know that other people understand how I am feeling.

I haven't taken acid reducers in the past and haven't reached the menopause yet, but do notice my symptoms vary at different times of the month. I think I might go back to my GP and ask her what she thinks about this new study that has come out particularly in relation to my hormone blood tests.  

Permalink Reply by Maggie on April 28, 2014 at 7:45am

I have been recommended to take a probiotic supplement and I wonder if this could help with any potential damage caused by the antibiotics.

Permalink Reply by KHS on April 2, 2014 at 5:20pm

This is great that you found a recent study.  I will also ask my dermatologist about the use of antiandrogens.  I have been on steroid injections to no avail.

On another note, I also am trying to find a cause/linkage.  I did use Aldara and Zyclara for several years.  The derm had me use it close to my hairline...just a thought. Have others used these meds?  They are extremely strong.

Permalink Reply by Camie on May 4, 2014 at 8:35pm

Hi KHS-- I was diagnosed with FFA just a few months ago but in reading this link I read that you mentioned Zyclara.  I was prescribed it about 3 years ago and didn't finish the full cycle--I was on about day 12 and had to stop.  I had developed and auto-immune reaction called Stevens-Johnson Syndrome where your skin basically starts to die off--this happened ALL along my bottom lips--they were raw.  I think the only reason it didn't progress into my mouth and throat was I was doing a really healthy cleanse and had been for about 3 weeks before that.  The pain on my lips was amazing but my derm at the time was just proud that he had figured out what the problem was!  There was no follow-up or any other discussion after that. And I stopped going to that doctor then anyway.  

I applied the cream ONLY to the skin on my face and was very careful not to go near my lips or eyes--now my hairline?  That's another story--I think the doctor told me to put it in the hairline too.  So, I'm with you!  Could the FFA be another auto-immune reaction to a very strong cancer cream?  I hope this helps you :) Camie

Permalink Reply by Geri on April 17, 2014 at 2:07pm

I was diagnosed with FFA in Nov 2013.  I am currently taking Doxycycline and Plaquenil, topically fluocinide and clobetasol.  I inquired about finasteride and dutasteride.  She said she would only prescribe it once I have gone through menopause, as it increases incidence of breast cancer if taken pre-monopausal, also very dangerous drug to a fetus if taken accidentally (or even if you touch the pill itself).

Permalink Reply by Suzanne Capella on April 24, 2014 at 11:59am

Hi there, not very good at finding my way around these web sites, but here we go.  I was diagnosed with FFA 4 weeks ago.  It wasn't until I went to the hairdresser and she noticed my receeding hairline, I go regularly, every 6 weeks, and in that time I have lost about 1/2 inch - 1inch around my frontal hairline.  This has come as such a shock to me as I have no idea as to what to expect, or what I should be doing to try and stop this, or whether I can!!!  I lost my husband 2 1/2 years ago and was left with a struggling business, 6 children and many other problems. I wasn't too sure if the shock or stress, had anything to do with my problem, its just so frustrating not knowing.  I have asked for an appointment with a specialist but what with the long NHS waiting lists I am not too sure how long this will take.   

I have a very positive mental attitude, I believe it is the only way you can get through things but the thought of loosing my hair fills me with dread, especially as it is long and I always used to say, "as long as my hair looks nice, I will feel good".

Have you any advice for me, many, many thanks.

Permalink Reply by Classical Anne in NC mountains on April 25, 2014 at 12:16pm

Maggie, I appreciate your thoughtful post.  I am rather new to this forum, hoping to find many more posts as helpful as yours.  As you say, knowing you are not alone is a good part of therapy.  My FFA was diagnosed last August [8 months ago], although obviously there were symptoms well ahead of that which caused me to seek answers.  My dermatologist [who I was referred to at that time] admitted she had not heard of Frontal Fibrosing Alopecia until my scalp plug biopsy returned with that diagnosis.  Oddly enough, and perhaps significantly, I was diagnosed with ringworm of the scalp and also rosacea at that same time.  Three delightful new diagnoses!  It does seem now that the facial papules and eyebrow loss were associated with the inflammation of my slowly receding hairline.  I was fortunate that neither my rosacea nor FFA were very far along at the time.  We began a regimen of scalp injections [steroid] in August, which I have continued every 6 weeks.  I am happy to say that after 8 months, my hair loss is much lighter than anticipated, and my rosacea is scarcely visible most days. 

Considering other patients' various questions, I would add this description of myself.  I am 64, had early menopause at 43, and have nearly a dozen autoimmune diseases, for which I'm medicated to the tune of 14 oral prescriptions, at a daily rate of 28 capsules, as well as annual infusion therapy for severe osteoporosis, in addition to the current series of scalp injections.  I must admit it puzzles me to learn of younger and far healthier women losing their hair much faster than I am, and have to believe the injections are in fact helping.  I acknowledge that with this form of scarring alopecia, every single hair gone is gone forever.  But at this stage I am still able to get away with scarves and wide headbands.  To my delight, and my husband's dismay, I am collecting some beautiful specimens to complement my wardrobe.  It keeps my spirits up.

Because of pre-existing conditions and drug interactions, I was unable to risk any of the other suggested treatments for FFA.  But I strongly recommend the scalp injections.  The dosage is quite small, and not systemic like oral steroids, so that there are little or no side effects.  The injections [in my case, 12 to 15 every 6 weeks] are very nearly painless, just briefly irritating.  But I suppose the discomfort would be relative to your scalp sensitivity, as well as your general pain tolerance level.  I know that FFA cannot be stopped or reversed, but I am very happy to be apparently slowing its progression.

My best wishes to you and all other FFA patients.

Anne

Permalink Reply by Suzanne Capella on April 25, 2014 at 1:41pm

Hi Anne, I was diagnosed with FFA by my Doctor who  told me what it was and said I should google it to find out all about it, no mention of going to see a specialist or anything.  I have asked to be referred to a dermatologist so I can at least get some answers and perhaps ask for these injections which you mention.  I would like to know, how far back the hair loss will go, will it go all the way and does it come to a time when you think, shave it all off and wear a wig!!!! 

Permalink Reply by Classical Anne in NC mountains on April 25, 2014 at 3:36pm

Suzanne, I do think you should see either a dermatologist or an endocrinologist.  The derm is more likely experienced with the scalp injections.  But the endo may have informative suggestions as well.  It is my understanding that with FFA [unlike other alopecias] the hair recedes only as far as the midline, from ear to ear over the crown.  Of course that's more than enough when we know it is permanent loss.  Yet I'm very grateful to maintain an apparently healthy full amount of hair on the back of my head.  I think it is less expensive, and more convenient, simply to wear scarves and wide headbands, rather than a wig.  But I am open to the fact that my hair may recede to such a point that I would just feel better in public with a pretty wig.  Right now, I count myself fortunate that my hairline has remained almost the same for 8 months on injections.  Good luck with seeing your new specialist!

Anne

Permalink Reply by Maggie on April 28, 2014 at 7:32am

Hi Suzanne sorry I didn't reply to your earlier post but I was waiting until after this weekend to see if I had any other news as I went to see a Trichologist on Saturday, who spoke more sense than any of the doctors that I have seen so far. My GP hadn't heard of FFA and after two visits to a dermatologist I have Dermovate cream and nothing else. Last time I saw him he asked me to consider if I wanted to go back to see him again. I asked him if he was saying there was no point as basically he can't do anything for me and that was pretty much the response - he wasn't keen on giving steroid injections or the anti malarial drugs and dismissed any hormonal link. So my experience of the traditional medical route isn't great and I have to say that the more I read I'm less and less keen on going down these routes anyway as I don't want to get some other problem as a result of the drugs I've been given.

I feel as if I've been on a merry go round with my "rosacea" over the last 5 years as the first doctor said it was bad acne and gave me a long course of antibiotics and benzoyl peroxide cream to clear it, which made very little difference (apart from bleaching everything else in sight!). The second doctor said it is rosacea and gave me different antibiotics and said peroxide is one of the worst things you can do for it. There was a slight improvement with the antibiotics but as soon as I stopped them the lumps and very painful bumps returned. so I am now reluctant to go down a try and see route with the FFA.

The Trichologist told me a lot about how hair grows and react and said that 20 years ago she would see 5 cases of FFA a year in the clinic but now she sees 5 a week - quite a frightening statistic. They are of course very interested in FFA and are members of various medical and non medical organisations that are researching this and in their clinic the most effective treatment has been steroid drops. I am now going to have a good think about where I stand and what I want to do about this. I desparately want to find an answer to why it is happening and how to stop it but I'm not going to put my body at more risk trying to find something that works. I am going back to my doctor tomorrow to find out exactly what my blood tests showed as I was just told that everything was fine apart from some hormone ratios being a bit unusual but nothing to worry about. The Trichologist had a different take on this as what is normal clinically may not necessarily be ok for hair growth - ferritin levels in particular, she also thought I was maybe light in protein in my diet. Despite having what I consider a healthy diet I don't eat a lot of red meat so I'll be interested to see exactly what the blood results were and what the hormone levels say. The Trichologist emphasised that FFA is an inflammatory disease and if you can find the things that are triggering the inflammation in your body that could help. Last year I started suffering from pins and needles and numbness in my arms and legs and was tested for coeliac, which I don't have, but the doctor suggested going wheat free to see if that helped. I am very pleased to say that that was like a miracle - my numbness went and I no longer take the fibre supplements and anti-spasmodic drugs for my irritable bowel syndrome that I have taken for the last 26 years. This does make me think that an awful lot of my problems are due to what I am putting into my body and environmental factors around me - if only I can find out what is upsetting my hair.

I know this is quite a ramble and apologies for that, but this is where I am up to now - I still think that there is some hormonal link with the FFA for me as the burning on my scalp is definitely worse at certain times of the month as is my "rosacea". I have read that spearmint tea is a good anti-androgen so am thinking of trying that. Reading the posts on this site really helps me as at least I know I'm not alone in dealing with this and feeling frustrated with it. I'll update this with any further developments I have.

Best wishes, Maggie

Permalink Reply by Maggie on April 28, 2014 at 7:39am

Thanks for your reply Anne - it really does help knowing that others are going through the same and the link with rosacea is very interesting. I have just written another reply to Suzanne where I give some more details on my rosacea and a recent visit to a Trichologist. I am quite wary of the steroid injections and it is not something that my dermatologist was keen to go down the route of so for now I'm still investigating. I am trying to look for what triggers my rosacea as it does have flare ups when it is really bad - it's such a good look - lumpy, inflamed face and receding hairline! As the rosacea is more visible when it has a flare up I am hoping that if I can identify what triggers that and avoid it it may help my FFA.

Best wishes, Maggie

Permalink Reply by Classical Anne in NC mountains on April 28, 2014 at 11:55am

Maggie, thanks for the info from your Trichologist.  That's a specialty I had never even heard of.  I'm sure you know that extreme changes in the atmosphere do trigger the rosacea -- cold wind, hot sun, etc.  That includes internal atmosphere, as I know the rosacea lingers after hot flashes, which are definitely hormonal. Other than that, I don't think I've yet identified any specific link to my rosacea.  But as I said elsewhere, it really seems to be much less visible since going on the steroid injections.  Unfortunately, what works for one doesn't necessarily work for others.  It's so good to share our stories and see what approaches work for each of us, maybe gleaning new suggestions to take to our MDs for approval in our own specific cases.  I am so glad I joined this forum, and already have a full list of ideas to work on.

Best wishes, Anne [Classical, that is, as there is another very thoughtful and helpful Anne on this discussion]

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