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Newly diagnosed - help!

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RedDeath614 View Drop Down
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    Posted: 08/August/2017 at 5:13pm
Hi all,

I hope someone can help advise me on what I can do, as I am really stuck right now.

I received a diagnosis of FFA/lichen planopilaris just over a month ago now. I had a biopsy carried out in April and got the results in early July. I was stunned to learn of the outcome as I had never heard of this before and had not been told anything by consultants beforehand. I know I've been losing hair for a few years and had no idea why this was, I thought it might be connected to sebhorreic dermatitis as I have patches of that above my eyebrows - or I have been told that is what I have on my face, who knows.

Anyway I had a look on here after the diagnosis - the junior doctor really had no clue about LPP/FFA - and I have been really thankful for this resource in all honesty. However I have nowhere to turn as the local NHS/Dermatology unit have no hair loss expert or FFA consultant and the doctor I saw merely prescribed Dermovate, and said there was nothing else that could be done about the FFA. From looking on here, I can now see that is probably not true Confused

I went to my GP and asked her to refer me to Dr Harries in Manchester, but she just called me today and said they have had a letter back from his surgery and they have refused to accept me as an out of area referral. When I saw my GP I asked if she could prescribe the steroids advised on here but as I am relatively young (37) and childless she is really reluctant to do this without expert advice. I also have other medical issues that are ongoing so this is the icing on the cake.

Please can someone advise on what I can do? Is there a Midlands expert I can be referred to for proper advice, treatment and monitoring? I am based in the East Midlands and am happy to travel. Just very desperate right now and no clue where to turn! My GP advised me to go private but I am not exactly swimming in cash. Also will there be a better quality of care? I've no idea.

I'm also concerned about the hair loss itself - I try to do my best to disguise it but you can see my scalp :( I would just like to know if I can stop it or if not, just try to disguise it with a custom hairpiece because it is really destroying my confidence.
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Pavla View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 10/August/2017 at 9:07pm
Could you afford to visit a Trichologist privately?  I couldn't wait for my hospital referral to come through so went down this route and it was he who diagnosed FFA immediately.  He also wrote a letter to my GP informing them what my condition was and what treatment I should start immediately...my GP was more than happy to follow his advice and prescribe me Steroid Gel and Hydroxychloroquine and I also started using Regaine 5% (although that wasn't available on prescription and, at the time, the 5% was only available for Men not women...had to pretend it was for my husband as, if you were asked and said it was for you, they wouldn't sell it!).   I think it cost me £150 for the consultation but it was well worth it just for my peace of mind.  I waited another five weeks for my hospital consultation and they were a bit taken aback at what treatment I was getting but admitted that it was the right course of action to take.  Fortunately, within a few months there was a hair specialist appointed and she was fantastic (Dr. Harries actually inspired her and she worked for three years with the world's expert in Canada so I was in safe hands).  The only other treatment I received from her was steroid injections into my scalp.  Had these for about a year.  
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RedDeath614 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RedDeath614 Quote  Post ReplyReply Direct Link To This Post Posted: 10/August/2017 at 11:06pm
Thanks so much for your reply, Pavla :)

Yes I could afford at least one private consultation - but is it better to go to a Trichologist or Dermatologist? I am not sure who to trust in these circumstances, I feel badly let down by dermatologists already. Could you recommend anyone or give me the name of the Trichologist you saw? Does he work in the Midlands?

I understand that the GP followed the Trichologist's advice in your case but I'm really concerned at the attitude of my GP too. In a way it's understandable given that taking steroids can affect your ability to have children but I don't even have confidence to date right now thanks to the hairloss, never mind anything else. I feel like I can't say any of this to her as I'll break down in tears and then be embarrassed. I just know she didn't react well when I mentioned the steroids and she hates prescribing them even for my mum - who has a different condition which she also needs steroids for. It is just so frustrating having - excuse my French - c**p medical attention all round!! I used to have a brilliant GP but he had to close down his surgery due to NHS cutbacks. I'm really tempted to try and get back to him, even though I'm not in his catchment area....

Mini rant over.

Did you manage to get the Regaine prescribed to you? It's hard to know from your comment. Is it likely to help me and how? Will my hairloss stop and will my hair grow back with it? I feel like taking it but I would like some expert to monitor if it actually has an impact on me or not. Right now I simply have no idea at what stage this FFA is at or if it can be controlled or not. Just clueless and upset and having no real medical support is making everything worse.

We have no hairloss expert in Leicester as from what I can work out, the one good one that used to be available on the NHS has also gone private. Hence my GP's advice to also go private. My GP did say she would look locally and see if she can refer me elsewhere. I would really like someone Midlands based to recommend an NHS dermatologist who might see me too. Or failing that just a dermatologist in the UK who would be happy to see me! I am ok to travel. Could you or anyone else advise on that point please?


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Pavla View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 13/August/2017 at 7:28pm
The Tricologist I saw was Ian Salis from The Hair Medic www.hairmedic.co.uk.  If you visit the site you can see he has clinics across the country...there is one in Nottingham (not sure how far that is away from Leicester!).  A Tricologist is a specialist in hair.  If you don't have a Dermatologist, who specialises in hair, then I honestly think you're on a hiding to nothing with them.  They don't keep up to date with current research, they have no idea what treatment is required.  The consultant I was seeing for a couple of years has just left and moved abroad.  The last appointment I had was with a Dermatologist.  A very nice lady but she couldn't understand why I was using Regaine 5%.  Your hair will never grow back where your scalp has 'scarred' over as the follicle has been burned away by the inflammation.  You use Regaine 5% to 'bulk' up the hair that you have remaining and to make it stronger in the hope that it resists the inflammation.  If you saw me, you would never believe I had lost hair.  In part, that is down to using Regaine and a great hairdresser who is able to use the hair that I have to cover/disguise the hair loss.  Trying to get that point across to the Dermatologist I saw a few months ago...I might as well have been banging my head against a brick wall and I could have screamed when she just smiled a smile that said "Yes, dear...you just believe that if you want to"!!! Unhappy

As far as I'm aware the Trichologist can't prescribe you the likes of Hydroxychloroquine etc but, as I mentioned, he did write to my GP and recommend a course of action.  I also obtained some Regaine 2% from the Trichologist...he couldn't sell me the 5% because at that time it wasn't licenced for use by women in the UK.  Now that it is I would imagine that you could get this from him (although it is probably cheaper getting it via the internet).  He may be able to give you some names of Dermatologists who can help you nearer to where you live.

You can't get Regaine on prescription...you have to purchase this privately.  I think I pay something like £45 for three month's supply.  Once you start using it, you have to keep doing so, so it is a longterm 'investment'.

Your GP is responsible not just for your physical health but also your mental health.  I would recommend that you do talk to her, and stress that this is affecting you not just physically but mentally too.  Better she do something now to help you.  If it takes breaking down in front of her, don't see it as a weakness or be embarrassed.  It's just you asking for help.
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RedDeath614 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RedDeath614 Quote  Post ReplyReply Direct Link To This Post Posted: 14/August/2017 at 11:03pm
Thanks so much again, you are a star Star

After I read your first message I googled Trichologists and Ian Sallis came up! I have made an appointment to see him, earliest I can get is September but I feel reassured after what you have said that he knows what he's doing, or at least he sounds like he does. I'm seeing him in Nottingham, which is not far at all and I work there sometimes so it's handy. Also I think his charges are reasonable and it's likely I could afford to keep seeing him if I need to. I looked at what private Dermatologists charge and it's absolutely crazy, we are talking thousands for consultations and treatment! I would rather invest that sort of money in either long term treatment that works or hair systems to help my confidence, in all honesty. 

So sorry to hear about your experience with the Dermatologist, I thought it was just me who had had these rubbish experiences. The first Derm I saw didn't even bother to pick up on my scalp condition, that is how little he cared! If he had been bothered I'm sure this would have been picked up 3 years ago now. It's horrible to think of how much time has been wasted. 

It is great that you have found something that works for you! I hope it might work for me too. I can't imagine being able to fully disguise the loss at this stage but maybe it might be possible, who knows. If Regaine has helped you that much it's brilliant! I was taking viviscal a year or so ago - well before I knew my condition but I did know I was losing hair - and that definitely made new small hairs grow but they did fall out fairly quickly so I am guessing my hair is very weak, or perhaps the inflammation has taken over too much. Regaine sounds it costs the same as Viviscal. I don't mind taking something long term if it helps me in some way. The young Derm that recently saw me said I hadn't lost all my follicles so prescribed Dermovate to try and 'save' those, but it sounds like it just won't work to stop the inflammation. 

Anyway I will wait until my appointment and see what happens. 
You are right, if Ian recommends what to do to my GP, then she should listen to him. Perhaps Ian might be able to advise my young Derm on the use of steroids etc to manage the condition too. You say you had some in your scalp? I can tell the Derm that the Dermovate doesn't seem to be helping. Hopefully he will listen and do something. 

I will try to be strong with my GP. It really depends on how I feel at the time. I can imagine we all feel a bit vulnerable with this condition. 

I found out that Minoxidil is the same as Regaine - would you say that there's any difference? Also do you use the Regaine 5% for men or the 5% for women? I can see there are two types now. 
Once again thanks for your advice, it has made me feel so much better to hear your advice re Ian and that you have had a good experience with him Thumbs Up
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Pavla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 15/August/2017 at 9:25pm
Glad you have booked to see Ian Salis.  I've just re-read the letter he sent my GP and he also recommended that I use Coal Tar Shampoo...this was to help with the itching that I was experienced.  I only used it, once a week, for a couple of months and it definitely seemed to help.  Think it just cleaned away all the residues from my scalp.  He also recommended Synalar Gel (steroid) and I used this until I saw the hair specialist at the Dermatology Department who switched me to a liquid steroid application.

He knew within seconds of examining my scalp that I had FFA but advised me (and my GP) that a biopsy would be required to confirm this.  I actually thought about going private to get this done quickly but I was lucky that my appointment came through within 10 days and then I only had to wait for just a couple of weeks to get it done!  

I was very lucky with the hair specialist I saw for most of the time.  Fortunately, when she left I was at the end of my regular visits and she reassured me that things had settled down and, hopefully, it won't flare up again due to the fact that I'm continuing with the treatment.  

I was actually prescribed Betnovate, which I think is very similar to Dermovate (a scalp steroid treatment).  I originally used it twice a day (just behind the hairline), then went down to once a day.  At my last appointment, the Dermatologist said to just use it once or twice a week.  To keep an eye on the situation and if I thought my scalp was showing signs of redness to increase use.  However, I think I'm only using it once a fortnight (and that is if I remember!).

Yes I had steroid injections into my scalp for a while.  Not exactly a pleasant experience but one I was willing to undergo and it was over in a couple of minutes.

Regaine and Minoxidil are the same thing.  I still use the Regaine 5% for Men as it's what I have always used.  I would imagine that it is exactly the same formulation as the Women version but Ian Salis will advise.

Let me know how you get on with Ian.  I found him very easy to talk to and put me at ease straightaway.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Paw Quote  Post ReplyReply Direct Link To This Post Posted: 26/September/2017 at 5:26pm
Hi Just wanted to say how encouraging to see one person giving such thorough support and help to a new member .Well done
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RedDeath614 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RedDeath614 Quote  Post ReplyReply Direct Link To This Post Posted: 08/November/2017 at 11:52pm
Hi Pavla - and anyone else reading!

I'm sorry it has taken me ages to post an update since seeing Ian Sallis, my life has been manic to put it mildly and even now I'm shattered and need sleep but thought it best to drag myself to the pc to write an update.

So I saw Ian around 15 September I believe. I showed him the letter/diagnosis from the Derm of FFA and he obviously took a good look at my scalp. He totally disagreed with the diagnosis! He actually said that if a biopsy hadn't been taken that suggested FFA, then he would not have even considered it in my case. To say I was in shock is an understatement - this is the last thing I was expecting! He said he thinks I have hereditary female pattern baldness but that it's being exacerbated by low vitamin levels. Another thing - I had a blood test done at my GP's just before I saw Ian, and although I didn't take the results to him, I told him everything came back ok. He said - what your GP says is ok and what I think is ok are often two different things. I sent my blood results to him afterwards and he said my iron levels were really low, my vitamin D levels needed to be double what they were and my B12 needed a big boost too. Again I was in shock. I googled iron levels to be sure of what he was saying and he's right, my levels are really low. 

Another thing which is great about the appointment is that I mentioned I had seb derm on my face - above eyebrows and not sure if this or the FFA led to hair loss in the eyebrows, but he said he has seb derm too! I was relieved and also thankful that he understood I have several possible issues affecting the hair loss. He did say he couldn't advise about the hair on my face as much but to use the coal tar shampoo he suggested to see if it cleared the seb derm on the scalp. I doubted it would as I've used T Gel in the past, however the Alphosyl he advised has worked like a charm! Also feels as if it has made my hair thicker pretty quickly!

So to summarise he suggested boosting all my vitamins, using Regaine 5% and applying the Alphosyl shampoo for at least 3-4 months and see if it makes any difference. He did say not to tell the Derm we are disputing his diagnosis until we are sure this is working, but he said that the pattern of my hairloss did not suggest FFA at all. He also massively reassured me when he said that any scarring I had was minimal in his opinion, and not all over my head as the Derm had led me to believe. He said he felt optimistic that my hair would grow back. I've got to be honest and say I still feel cynical about this - because I am so far away from believing I will be ok again - but there have been a few differences already.

I have taken everything suggested for almost 2 months so far. What I can say is that my hair on my crown feels thicker, which I didn't expect. I read your post about strengthening the existing hair Pavla, and this seems to be the only way to describe it. It feels 'poofy' or 'bouncy' on top even. I am finding it easier to disguise the scalp when my hair has this extra texture to it, although we are no way out of the woods yet.

One more thing, I have not noticed anywhere near as much hair falling out now. Before all this I had a lot of shedding every time I washed my hair every two days. Now I get barely 20% of what I used to. Again not sure what this is down to exactly but it makes me feel more normal and less upset. 

I got my haircut a month ago - the ends really needed it! - and I told my hairdresser what I'm doing. I also asked her if she noticed any new growth, genuinely not expecting her to say anything, it had only been a month after all. She pointed to some fuzzy hairs on top of my crown but these might be too long to be down to the recent medication. Then she had a good look at the top of my scalp and said she could see a whole small area on the top of my scalp where hairs seemed to be growing back through! She pointed it out to me in the mirror but I think they must be so tiny I couldn't see them, however I believe and trust her - she has her own hairloss issues due to PCOS so she's really interested in this. I was stunned to hear that, but happy, obviously! Although I am hoping that more will grow back, I guess some areas may take longer than others. 

I just wanted to post an update here to let everyone know what is happening and mainly because this condition could be misdiagnosed! Even if it's not, it seems that Regaine is something that could help. I am also noticing that the seb derm on my face is becoming easier to control, although I am also washing my face with a mix of baking soda and coconut oil for that too. The tiny baby hairs around my eye area have all come back - not something I actually want but hey ho! - and my eyebrow hair has been growing for a few months now too. I actually have needed to pluck my eyebrows weekly or bi-weekly again, whereas before I didn't need to touch them for 6-8 months?! I think the vitamins may also be having an impact although who knows at this stage. I am just happy that I may be getting somewhere, although I don't know where I will end up yet. 

Thankyou so much to Pavla and this forum for being such a help! I wish I had gone to Iain Sallis much sooner. Can't wait to see him again in the new year - do note that he does not put pressure on seeing you again, he leaves it up to you! He actually told me not to come back for at least 6 months because it would take this much time to see a change and he's probably right, although he said I am welcome back sooner if I want to go. He took photos of the hairloss too which sounds simple but why don't the NHS do that?! It's exactly what needs to be done to see if anything is making a difference and if new hair is growing back or not. 

Watch this space, there is hope! I would like to advise everyone to get a second opinion if they don't feel confident they have FFA. In my case, yes I have had itchy scalp but never saw any inflammation. I was puzzled when I was told to apply Dermovate to red patches on my scalp - as far as I am concerned, I don't have red patches! And believe me I can see whole areas of my scalp quite clearly thanks to the hairloss, it is all pale. Anyway I did not use Dermovate beyond about 3 weeks. I just didn't see the point. Iain Sallis said that FFA sufferers have their whole hairline move back upto the scalp, but he said my hairline looked normal, just patchy. So for him I think this is where part of the confusion is. 

Must go to bed now. If anyone has any questions please feel free to ask and huge thanks to Pavla once more StarClap
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tinkscat Quote  Post ReplyReply Direct Link To This Post Posted: 19/November/2017 at 7:14pm
Hi Everyone.
I was newly diagnosed with Lichen planopilaris / Frontal fibrosising alopecia on Wednesday after my biopsy results came back. I had self diagnosed the condition so it wasn't a huge shock. I have lost both eyebrows and about an inch of hair from front hairline.
They are trying to start me on anti malarial tablets and a strong steroid cream.
I started my own alternative therapies after researching it.
I use essential oils lavender ,tea tree , rosemary and peppermint i mix them individually with virgin olive oil or coconut oil.
I massage it into my hair and at night i put organic castor oil on the parts that are receding and massage it in.
I have started taking biotin, saw palmetto and a good multi vitamin, also iron supplements, but i have always had low ferritin levels. CHeck with a specialist about iron as too much is not good for you!
I have cut down on sugar and increased my fruit intake.
My one big downfall that is a major contribution to my hair situation is the stress that i have endured. It has been relentless and unless i win the lottery it will be ongoing.
I don't wash my hair so frequently. I put it in a very soft scrunchie and try not to pull it to hard!!
I wash and condition my hair with organic shampoo and conditioner. Lush rehab shampoo is good and Retread conditioner. I dont use anything with parabens, sulphates or alcohol in them.
I think it has has helped, the recession has not progressed, but i am not a medical person so i am just keeping my fingers crossed!!
Another thing that i came across when researching, and you might eant a strong stomach to look at you tube videos, is DEMODEX mites.
These are tiny little parastic mites that are so small they live in hair follicles.
They cannot be seen by the naked eye. Apparently most humans have them, but some people are more susceptible to them and become irritated by them.
It is worth looking into before taking any heavy duty medication with nasty side effects.
One more thing, i saw this morning that some people use micro derma rollers on receding hairlines. I have not tried this so do not know if it helps or not!!
Good luck everyone with finding a solution for this very upsetting and distressing condition.
Stay positive. X
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Pavla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 19/November/2017 at 10:27pm
Hi RedDeath, so very pleased that you found your visit to Ian Sallis so helpful.  I saw Ian before I had a hospital appointment and within seconds of inspecting my scalp he diagnosed FFA (which wasn't a surprise as that is what I had admitted to myself I must have after intensive research via the wonder that is the world wide web!).  This guy knows his stuff and advised on an immediate start of treatment via a letter to my GP (who fortunately accepted his expert advice).  Unlike FFA, your hair could regrow so I'm really over the moon for you.  Keep us updated with your journey as it will be informative to those who have the same condition.  Thumbs Up
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