Frontal fibrosing alopecia: Hi everyone, I have... - Alopecia UK

Alopecia UK
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Frontal fibrosing alopecia

Kristy2
Kristy2

Hi everyone, I have just joined this community. I was diagnosed with this miserable condition two years ago. I hesitated about going to my GP because losing hair seemed rather trivial. I notice a number of the posts are two to three years old and it would be nice to have some updates. I have seen a dermatologist who has prescribed Protopic ointment to be used twice a week. Vaseline type base and so unpleasant to use and messes up my thin hair. I have also tried Lumigan drops and take Nourkrin tablets twice a day. I do have a slightly underactive thyroid but I am on thyroxine. I used to have a lot of very dark hair and it just makes me feel to depressed to see it so thin.

I am sure that this condition is progressing and it really makes me depressed. I am thinking of buying one of those Thermodome light emitting helmets. Any opinions please, are they helpful or just a waste of money? Should be so grateful of your comments, I know that this is a relatively minor condition but just so very dismal and depressing.

22 Replies
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naomi92
naomi92Administrator

Hi Kristy2, I'm sorry to hear about your hair loss. I know there's a whole community of people here who understand exactly how you are feeling. I think we all go through a lot on our alopecia journey and how one person deals with it is different to the next. For some they must try every medication, treatment option and possibility going and for some they prefer to hold a more wait and see approach. I think no matter which route you take it's always worth considering that currently alopecia or any form has no cure or guarantees. What works for some may not work for others. However it's why it's so great when we can have communities such as this to be able to share those experiences.

You're right that this group can be quite quiet, there is a lot of helpful and relevant information to be found however you may also find it beneficial to be part of our closed Facebook group - facebook.com/groups/Alopeci...

This group has a lot more members, is more active and therefore you may get more shared experiences and opinions faster in there. The group is just also a great space to support, find advice and others who can understand the affect living with alopecia can have on our lives.

I hope this helps x

I am delighted to receive your prompt and kind reply naomi92 and to be part of your community. This is a condition which you do not really want to discuss with one's friends. I really would be interested in hearing any reports of the Thermodome helmet, think that this sort of treatment is used in specialist centres?

Frontal Fibrosing Alopecia FFA facebook.com/groups/1809793...

Frontal fibrosing alopecia support facebook.com/groups/1631004...

Hi in addition to the national Alopecia UK facebook groups I have also found these two other closed facebook groups invaluable for support and advice from others with FFA. Sign up with them.

Kristy2
Kristy2
in reply to paw1

Thank you very much paw1. I am not on Facebook. Please, have you read any comments about a Thermodome helmet, it is a form of light treatment. Look forward to hearing from you.

I think the odd number of times light therapy helemts have been mentioned on the facebook pages it seems most people comment when they have started to use or are considering. We never really see any miraculous results put on the site. Additionally most people are also using other types of medications and treatments too.

You need to ask about a referral to a dermatologist with a specialism in hair loss for full advice on your loss.

I have no expereince personally of using these helmets

Kristy2
Kristy2
in reply to paw1

Thank you Paw1. I started going to a dermatologist 2 years ago and he has prescribed Protopic twice a week. Not sure if it does anything??

paw1
paw1
in reply to Kristy2

I understand that this will be given to cut down on inflamation of the hair follicles only. There are other treatments that can be offered to possibly help with hair retention of remaining hair. Nothing is guaranteed though unfortunately. I do hope your dermatologist is one with an interest/specialism in alopecia.

Kristy2
Kristy2
in reply to paw1

Thank you once again paw1. Please, could you possibly give me the name of any of these other treatments or names of these hair retention products. This dermatologist whom I see privately is supposed to have an interest in alopecia but who knows???

I would recommend you ask for a referal through your GP to a dermatologist who specialises in alopeicia. Also if possible do create a face book page so you can tap in to the closed groups mentioned above. You only need to use if for them.

Some people use regaine or are prescibed finasteride. Again I would not recommend anything without speaking to a specialist. No guarantees with anything though unfortunately.

Kristy2
Kristy2
in reply to paw1

Thank you paw1. You have been very helpful. I have been recommended Regaine but was reluctant to use it for various reasons. I am so interested in that Thermodome helmet but cannot read any really helpful reviews. Thank you so much.

If you have not already, you may want to check out this group (not on Facebook):

alopeciaworld.com/group/fro...

Kristy2
Kristy2
in reply to RoxyTy

Thank you RoxTy. I appreciate that web-site address as I am not on Facebook. I have had a quick look. If you do not mind me asking, do you suffer from Frontal Fibrosing Alopecia. I try and tell myself that it is not serious compared with some medical conditions but all the same, hair loss is miserable. Thank you.

Hi sorry to hear that with alopecia I found out by my dermatologist that in most cases it's due to autoimmune disease which is vitamin d3 deficiency might be worth having a test for this I've had alopecia 10 years on/off but 6 months ago the worst almost half my hair fell out in years past always a couple coin size patches always able to hide it as lucky I had thick long hair never did I have a very healthy diet with such a busy life most times would only eat once a day since taking d3 with iron hair has started to grow back I am taking 4 x the recommended daily intake on vitamin d normal adult 2500iu , 10000 is okay to take wouldn't cause any harm but after 10 weeks reduce it to half gradually back to 2500iu I've found this had helped significantly compared to everything else I've tried and I've tried every shampoo and hair regrowth product out there almost spending thousands nothing of that kind worked for me definitely worth getting tested for d deficiency even with the most healthy diet you could still have it x

Kristy2
Kristy2
in reply to H23456

Thank you very much H23456, I shall google scholar vit d3. Went to my derm last week, no mention of such a thing. I am avoiding any sunscreen around the hairline, I have frontal fibrosing alopecia. I was thinking about buying one of those thermoderm helmets as maybe phototherapy helps, supposed to reduce inflammation. Should like to know more about it, costs £750 but worthwhile if effective.

Kristy2
Kristy2
in reply to H23456

Have just looked up on Google Scholar and certainly vit D deficiency could be a factor. Please, do you buy the tablets and where? To get a Dr's appointment is not easy. This condition makes me miserable, should be so grateful. I had a mass of dark brown hair and now all around the frontline it is so thin. Is yours getting better do you think as a result of vit tablets?

H23456
H23456
in reply to Kristy2

I've done a lot of research into the best vitamins as ones in Tesco asda ect a lot don't contain enough of what's needed I've brought mine from cytoplan a bit more than shop Prices but what's on the packet is exactly what I'm getting , from top of my ears down to bottom of back of my head I lost all of my hair fell out very quickly over a few months now within last 2-3 weeks it's like soft fluffy hair coming through only half a cm so far come through I'm hoping it keeps growing as I've had it grow back in the past by itself to a few cm all to fall out again I've had it since about 16 I'm 28 now First was a small patch top of my head noticeable after I had my son it grew back after 8 months by itself I was fine no problems with my hair really over the years I'd occasionally get a few patchy bits size of 5p 10p at back of my head it wasn't noticeable so it didn't bother me I had my daughter in 2010 no hair loss problems after I had her it's just in last 2 years it's gone so bad but running about after 3 kids there 1.5 ,8 and 12 and working from home I haven't kept to the best of diets , 8 weeks I've been taking vitamins d3, and iron I do think that these have helped more than anything else a week after taking them my body feels better too more energy less tired

3 weeks ago I've just started steroid injections too only had one small area injected to see if this helps my dermatologist said he would do one area to see as it doesn't work for everyone I'm to go back on 30th to have it checked and possibly more if he feels it's helped hair has grown back all over including the area that was treated but I'm more inclined to think it's the change in diet and vitamins that have helped where growth is all over, the injections was very quick he must have given me 30-40 took 5 minute and it was all done it wasn't anywhere near as painful as i expected it to be was just a bit stingy and sore for a few hours after on that area , doctors do routine blood tests when first report hair loss but the vitamin deficiency one you have to ask for normal levels should be between 50-80 mine was about 20 so well below average levels by me taking 10000iu a day it's putting my levels up 1-2 points a day it's awful having hair loss for no reason known but there is always a underlying reason for it it's just finding it a fixing the problem x

Kristy2
Kristy2
in reply to H23456

Thank you so very much. Please what is the exact name of this Vit D3 tablet, I think that it is worth a try?

xx

H23456
H23456
in reply to Kristy2

This is the one I am taking but talk to your dermatologist or doctor on how much to take everyones differnt just as the daily recommendation wouldn't be enough if you do have a deficiency would need 2x or 4x Reccomended daily allowance hopefully it helps and you start to se growth soon I started noticing it after 6weeks cytoplan.co.uk/high-potency...

Kristy2
Kristy2
in reply to H23456

Thank you very much H23456, shall try and buy some. Anything is worth a try. xx

maryemma
maryemma
in reply to Kristy2

Hi Kirsty 2 I was advised to take vit D3by the asthma nurse I buy them from the supermarket or chemist and the iron to but not such a high dose but think I will up it

I also take biotin for hair skin and nails . My hair is thin on top and round hair line I have been using regains and the hairline is coming back.Are you taking any regular medication I reads on another site the Vegifem vaginal tablets cause a lot of hair thinning and I have been on them over 2years 😥😢 I need to do a lot of reserch .Good luck 😄xx

I

Kristy2
Kristy2
in reply to maryemma

Thank you Maryemma. Your hair sounds like mine. Do you go to a dermatologist? I have been taking Noukrin for some time now. This was not prescribed by the derm. He did prescribe Regaine but I have not used it yet. He has prescribed Protopic ointment for the hairline to reduce inflammation which he can see, I cannot see it myself and I have no itching. Hairline has receded and frontal hair just so thin.

Independ
Independ
in reply to H23456

Hi read with interest your D3 reply. I have had scarring alopecia for over twenty years, but it only seem to affect a large portion of the crown and sides of my head. Fortunately I have long hair so it just about covers it, although the sides of my head are very thin and the scalp can be seen through. I went to a dermatologist in my forties, but there seem little they could do about it. Not sure they did a D3 deficiency test though. Although there are reports all the while that any vitamins you take just flush through your system and are not absorbed! Can you get this D3 vitamin on the high street, as I have only seen vitamin D?

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