Alopecia

Update... Lost almost 70% of my hair since August last year I have been to city hospital  Birmingham today to see a dermatologist and he has put me on a DPC course I have had my first skin test today to see if this course will be tried on me not looking forward to it but I think this is the next course for me to take as my hair is still falling out so will keep you all updated in the near future.

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  • I haven't heard of DPC, what is it? I am in a similar position, my hair is still falling out and I've probably lost 40% so far.  The dermatologist gave me Elocon lotion which had no effect whatsoever so I'd be very interested to hear how you get on with DPC please.

  • Hi Elainejaybird1 DPC is Diphencyprone is a contact allergin the aim of this treatment is to sensitise me to diphencyprone this causes a cellular reaction to occur in the upper layers of the skin on the scalp,which is believed to stimulate hair growth. The success varies on the severity and duration of the disease, but significant cosmetic improvement can be achieved in 85% of those with persistent AA and 40% with AT of people by the end of 6-8 months treatment and at the end of 6-8 months therapy 70% will retain a cosmetically acceptable head of hair. I had my patch test on Thursday and should be getting treatment within the next 2 weeks where I will treat myself at home for four weeks but have to go to hospital every week to check if it is working and then every month and the strength of the liquid gets stronger each month. I was not sure whether to go ahead with because it gives you eczema but the hospital and my husband said I should give it a go. If after the 4 weeks the hospital think it is not working they will stop the treatment anyway. I will keep you updated. Watch this space. 

  • Hi Loobylou how's it going with the DPC treatment? My hair continues to fall out, it's worrying as I have never been this bad before, probably lost 60 -70% now. Wigs are fine but not very comfortable especially in warmer weather are they? I have another appointment with the dermatologist in a couple of weeks, will keep you posted. Elaine

  • Hi Elainjaybird1 I'm into my 4th week now and my hair is still falling out what bit I have but also there is a little regrowth, I am only on the low dosage this month but should be the next strength next week when they call me back but have not had appointment yet. The first low dosage has not given me any bad side effects as yet so I am glad of that but not looking forward to the stronger strengths if i'm honest but will go ahead with it. Yes the wigs are too warm in the warm weather and it does get me down cannot wait to get it off. I need to look for some other head wear I cannot cope with the wig in the hot weather. Good luck with your dermatologist hope they can get you sorted. Please keep in touch and I will let you know how my next course goes. Lynda

  • i have heard no one really knows why this happens but dht from testosterone may be the culprit and or low hormones....or out of balance hence they arent alot of studies on hair loss on women. I read on here last night that a lady said hers stopped when she started taking 1000mg of saw palmetto which is a anti dpt supplement and so i thought i would try it for a month and see what happens and i also just started the IGROW helmet with low red light laser therapy you wear at home that works in 50% of cases...that and PRAYERS.......and also just started taking silica that many other people told me can help skin and hair.....taking lots of omega 3s and i also have had this going on for one year and although i had a mother n law that this happened to and she said in a year it just grew back on its on but came in sort of curly ..........but she is a prayer warrior. I pray everyones hair comes back.......

  • Hi loubyloo122 how is the DPC treatment going? My dermatologist couldn't offer me anything else apart from a strong course of steroids which he said may may not help. I have now lost 90% of my hair and got my husband to trim the remaining straggly bits off. It's very upsetting, I have no signs of growth at all.

    Elainejaybird1

  • Hello Elainejaybird I am still having my treatment I have lost all my hair now and I will be on the last strength of the treatment next week for the next four months. I have had a little bit of dry skin on the back of my head but nothing too drastic thank god. I seen my nurse yesterday and she says she can see some tiny bits of hair so hopefully it could be working and I will be seeing my consultant next month. I feel your pain in losing most of your hair mine has gone now and i think my eyelashes and eyebrows are going too so frustrating glad I have my wig to put on or I wouldn't go out of the house. Hope one of our treatments work so if one doesn't maybe the other will for either of us we must give it time and hopefully we will both get some good results. Good luck and keep in touch. Take care loubyloo.

  • Hi Loobylou122 how is your DPC treatment going? has it had any effect? I have been feeling a bit down, my hair doesn't seem to be growing and my eyelashes have started to fall out - just on one eye at the moment, its really weird, its the same side as the eyebrow I have lost. hope things are better for you x

  • Hello Elainejaybird1 I was thinking of getting in touch with you the weekend :-) Unfortunately the DPC has not worked for me and I have been taken off the treatment after being on it for five months. I have been discharged from Birmingham City Hospital but I have asked my dermatologist at my hospital to give me a follow up appointment which I should receive in the post. I am feeling really down now as they say there is nothing they can do for me know but to just have wigs on the NHS for the next 5 years. I am completely bald now and I have no eyelashes or eyebrows or any body hair at all. I have Alopecia universalis

    The thing what gets me down now is my eyebrows and eyelashes as I think people really notice I have non I hate talking to people face to face now. Need to do something about this but not sure what yet. Are you taking anything for your Alopecia at the moment? I feel for you as I know what you are going through it is a horrible thing to have just wished they could find why this happens and a cure for it soon. Lovely to hear from you keep me updated and take care.x

  • Hi Loobylou122. I am so sorry to hear your news, I don't think anyone realises how distressing this condition is unless they have it. It robs your self confidence completely. I am not on any treatment at the moment, at my last appointment the dermatologist could only offer me strong steroids which may ot may not make my hair grow and, even if it did, it may all fall out once I stopped taking them. I didn't think I could handle that so decided to give it a bit more time to see if it improved - it hasn't unfortunately. Has you dermatologist offered you steroids or immune suppressants? I have read about a drug called Ruxolitinib but don't think it's available here yet, I am going to ask if there are any trials in the UK - ask your dermatologist when you go. Read this:

    dailymail.co.uk/health/arti...

    I am using a Stila eyebrow pen which lasts pretty much all day, you have to practice a bit as you draw the hairs on one by one, it does look fairly realistic though. I ordered direct from Stila online but M&S have it listed. You can get eyebrows tattooed on but it's quite expensive. I haven't tried any false eyelashes yet but have read the ones one clear band look more realistic than the ones on a black band. I am quite fair so don't want any that are too dark.

    Do you get your wigs at the hospital? Here in Ipswich I am entitled to 2 wigs a year, the prescriptions are sent to a local specialist wig shop and I go there to select what I want. I have to pay towards the cost, I'm not sure what the allowance from the NHS is but I had to pay £69 for mine. I think they also stock stick on eyebrows, although I haven't looked into that yet.

    I know there are no words that will make you feel better but I am thinking of you and all the other alopecia sufferers out there, keep you chin up love 😉

    Elaine x

    Sent from my iPad

  • Hi Elaine,

    I am not on anything yet but I am going to ask my dermatologist if I can have something else to try when they get me my follow up appointment. I am willing to give everything a go to see if I can get my hair back and eyebrows and lashes it does knock my self confidence when talking to people. I do get my wigs from our local hospital and I do have to pay too the same as you I can have two a year too for up to five years. I have read about the new drug thats coming out Ruxolitinib and I would give that a try too if it was offered. I will have to try that eyebrow pencil before I go down the tattoo route my daughter asked me if I would have that done (think she was thinking of paying for me for my christmas present) but don't know if i could do it as it's there if you like it or not and I didn't have a lot of eyebrow before and they were quite fair to be honest. I need to think about that one a bit longer lol.

    I think I might ask about eyelashes and eyebrows when I go for my follow up and see what they can do for me.

    Hope you can get some results somewhere along the line and me too and I will share them if ever I am lucky enough to get my hair back. Good Luck for the future and keep in touch.

    Lynda x

  • Hi Lynda. How are you? How did your follow up appointment go? Did you get any further help? What did they say about your eyebrows and lashes? I have lost all of my eyelashes on one eye now (same eye as the brow I have lost). It's really getting me down. I bought some Eylure natural false lashes (Number 20) but I got into a terrible mess trying to apply them and gave up in the end which upset me. I don't know how teenagers wear them all the time although they probably have better eyesight than me, I'm not very good without my glasses! I have another appointment on 07/12 so will ask if there is anything I can try. I'm having a bad day today after the eyelash fiasco, the whole alopecia thing is really getting to me.

  • Hello Elaine,sorry to hear you are having a bad day I know how you feel I have them often too. My consultant said that there is nothing they can do and no over the counter medication will help either so it looks like I will have to live with this until my hair grows back (if it ever does) My dermatologist said if there was any cure that comes out in the future I could try that out but until then it's just a waiting game. I have tried doing eyebrows but gave it up as a bad job but havn't tried lashes yet. I am thinking of going to an alopecia group when I can find one locally as I think this is what I need to do to make me feel better about myself. I hope you can get some answers at your appointment but if not keep your chin up as that is all we can really do isn't it and hope that one day our hair will come back. Have a lovely christmas and hope 2017 may be better for us.

    Keep in touch.

    Lynda x

  • Hi Lynda how are you? I had my appointment with the dermatologist, he didn't offer anything just said to stay positive - easier said than done! He did say he would research to see if there was anything that would help with th eyelashes but I haven't heard from him as yet. I have tried and tried with false eyelashes but just can't seem to master it so am feeling very frustrated with the lack of eyelashes not to mention eyebrows. I still have no hair on my head and seem to have lost hair on my forearms although that doesn't bother me as far as appearance is concerned. Well we plod on don't we? Hope you have a lovely Christmas, stay in touch please

    Elaine xxxx jb42elaine@btinternet.com

  • Hi Elaine,

    I know how you feel it is frustrating isn't it but as you say we have to carry on and try to be positive. As I said before I am completely hairless now,in some respects that's a godsend don't have to shave under arms or legs anymore :-) but wished I had my hair, eyelashes and eyebrows. Its been 13 months now since it all started i just wished that whatever made it fall out would reverse and grow back again. Hope your dermatologist can come up with something in the very near future we will just have to keep listening and hope that something comes along.

    I am thinking of going to a meeting in the new year if I can get to one. Where are you from? How old are you Elaine if you don't mind me asking.

    Hope you have a wonderful christmas and both of us have a better new year (health wise). Keep in touch x.

    Lynda

  • Hi Lynda

    I'm 63 (almost 64!) and I live in Ipswich. I cant remember if you said, but do you have any history of alopecia? I had a few patches as a teenager into my early 20's then nothing until my 50's - again just a couple of small patches. its only been in the last 12 months that I have lost all my hair, eyebrows and lashes. are you still considering having your eyebrows tattooed?

    Elaine x

  • Hi Elaine,

    No history of having alopecia it just came and was really quick once I found my first patch. All my hair eyebrows and eyelashes had gone within 6 months wished to god I knew what caused it to go so quick. I have not decided yet what to do about my eyebrows I am a bit worried about them being permanent and people looking at me because I have never really had noticeable eyebrows, mine was very faint so not too sure yet. I am not very adventurous when it comes to something that can be noticed. I try not to look at people face on if I can help it because I keep wondering what they are thinking about my eyes (no lashes or eyebrows) the hair isn't so noticeable as it just looks like normal hair. I just hope in the very near future it all grows back again I keep praying.

    I am 56 by the way and live in the Midlands. Hope you have a wonderful Christmas and hopefully a better 2017.

    All The best and keep in touch.

    Lynda x

  • Thanks Lynda, I'll get back I touch when I've had my appointment. Elaine X

    jb42elaine@btinternet.com