Frontal fibrosing alopecia

[Houellebecq68]

Hello. I have been experiencing some hair loss which has accelerated quite rapidly in the past 3 months. I have seen a private dermatologist due to general indifference of GP & NHS waiting list. She more or less confirmed what I had already deduced myself from reading that it is most likely FFA with maybe some androgenetic alopecia thrown in for good measure. She recommended a costly biopsy (over £3000) that may not even provide a conclusive diagnosis but said was necessary to determine the best course of treatment. This seems somewhat contradictory to me. I am beginning to get concerned about the long term cost of dealing with this and whether it will actually prove worthwhile, in view of the unpredictable or temporary level of successes I have read about. I was wondering if anyone could share their experience in terms of expenditure, for example, per month or per year and whether they have found it to be worth it. I don't know if I would be better off just trying to come to terms with other solutions like decent wigs etc. Many thanks for any experiences anyone is willing to share.

I was diagnosed with this condition about 12 years ago.

I don't have any experience of private care because I was lucky enough to be sent to the NHS hair loss clinic where I was under the care of the leading expert in the condition in Scotland.

I know it is very important to start treatment as soon as possible. Once the hair follicle dies the hair is lost . So the emphasis of the treatment is on preventing further loss.

I tried every treatment that was available apart from the one which you are warned could damage your eye sight . I wasn't prepared to take that risk- one of the other treatments I had tried affected my focusing and I stopped that.

I got to a point where the consultant told me there was nothing that could be done for me so my appointments at the clinic stopped. But they give me prescriptions for 4 wigs a year on the NHS and I get to go and chose them at a wig salon. They aren't real hair ones but they are very good quality and expensive if I had to pay for them myself.So I do feel very lucky having the prescription.

And I'm afraid I have only a very little hair now which is at the back and which I shave off.

I don't really understand why you are being asked to pay such a large amount of money up front. I'm afraid I can't remember whether I had a biopsy . I do remember every appointment at the clinic having to have photographs taken of my hairline so they could measure the hair loss . That was extremely soul destroying.

It's awful that you are having to go to the private system for this issue. I'm now in the position of having to go privately for a cataract operation. The state of the NHS is so upsetting.

Thank you so much for sharing your experience.

Hi, I was diagnosed with this in 2016. I have been on Lymecycline 408mg once a day plus synalar gel applied when a patch is sore. I've also had steroid injections from time to time if things look a bit angry. If you can afford it (and you can get to London), go and see Dr David Fenton. He is a top hair loss dermatologist (the best in the country) and he's wonderful. My hair has stayed stable and I don't need any hairpieces, scarfs etc (I can just hide it with styling). He charges a lot - about £500 for a first appointment and then £350 per appointment thereafter (he suggested to me that I go every 3 months initially but, honestly, you could go just go once a year). I did need a biospy before I started the Lymecycline (luckily this was covered for me on my private insurance so I don't know how much it would cost) but I would ask if you have a steroid gel for your hairline to keep things stable whilst you wait for this. I can't see why your consultant can't refer you for a biopsy on the NHS if you can't afford it privately? You will have to wait but better something than nothing. You really do need to start treatment as soon as possible. There are effective treatments that slow down or stop this horrible disease but every hair you lose in the meantime won't grow back. App up your emotional distress and press, press, press for a biopsy on the NHS. If you can pull together the money for a private biopsy, do it and then go to Dr Fenton. He is semi-retired now and only does 1 day a week so I am not sure if he is taking on new patients but you can ask him for a recommendation. There are very few dermatologists who specialise in hair loss so you need to get in front of the right person. Good luck.

By the way, once you are on a treatment, you can get the prescription cost covered by the NHS. Dr Fenton just wrote to my GP and then I moved onto a regular NHS prescription. So I'm currently only paying for my annual check-in with him to ensure all is stable. Also, they have found a link between rosacea and FFA (I have both) so you need to get any rosacea sorted out as one can affect the other. That can be done via a normal dermatologist appointment. I hope this all helps.

And RunRunRudolph, I'm so sorry they weren't able to stabilise yours. I do recall Dr Fenton saying that he had had a couple of patients that just didn't respond to any treatment so it sounds like you were very unlucky. I am pleased that you are owning it and just using a hairpiece. They are some marvellous ones out there and I am sure you look gorgeous. My most glamorous friend wears wigs - just because she can so why not - and she looks fabulous.

Thank you for your messages. I have only just seen them. In the end I went to see another private dermatologist who diagnosed FFA without suggesting a biopsy and put me on medication immediately. I am due for a review in another 3 months. He said you need 6 months to determine progress. Time will tell. The cost is fine as only the first set of meds isn't covered by the NHS. I'm so glad for you that you seem to have gained some control over the progress of your own FFA. I really hope it continues for you 🤞🤞.

Hi @Houellebecq68 i hope you're doing okay. I've also just been diagnosed on the NHS. I turned down the biopsy because it's pretty obvious that it is FFA. However, the consultant I saw is recommending the steroid called Hydrocychloroquine which can affect eyesight and/or liver function so I'm quite reluctant to go onto it. I was also prescribed a topical steroid. Is this the medication you are on? Keen to hear from anyone who is! Would like to hear about side effects etc.
Thank you.

Hi. Sorry to hear you have been diagnosed with this. My dermatologist put me on doxycycline and Dermovate steroid scalp application (active ingredient clobetasol). I have also been using topical minoxidil, aminexil shampoo, the Ordinary hair density serum and rosemary oil. I am taking vitamin supplements as well as saw palmetto and pumpkin seeds oil supplements, basically anything that might help. The dermatologist said that he would consider the hydroxychloroquine if the current medication wasn't as effective as hoped.

Thank you for taking the time to reply, that's really helpful. Appreciate it.