Alopecia

[loobylou122]

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.

[Elainejaybird1]

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.

[loobylou122 in reply to Elainejaybird1]

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. 

[Elainejaybird1]

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

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1]

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

[loobylou122 in reply to 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.

[Elainejaybird1 in reply to loobylou122]

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

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1]

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

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1 in reply to loobylou122]

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.

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1 in reply to loobylou122]

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 [e-mail]

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1 in reply to loobylou122]

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

[loobylou122 in reply to Elainejaybird1]

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

[Elainejaybird1 in reply to loobylou122]

Hi Lynda how's it going? I had my follow up with the dermatologist but he couldn't offer any help, just told me to stay positive- easier said than done! I decided to have my eyebrows tattooed, the lady suggested I have eyeliner too as it disguises the lack of eyelashes. My goodness, that's not for the faint hearted! It is painful (in the pocket too!) and after I looked as though I'd been mugged! I have had one session and have to go back in 4 weeks for a top up, the eyebrows look very dark to start with but have faded down, the eyeliner is a better on one eye than the other so that willl need more work. I would recommend the eyebrows, it's nice not having to draw them on everyday. I'll reserve judgement on the eyeliner until I've had the next appointment, really because it wasn't pleasant to have done! I chose a lady who does work for the NHS - she seemed more sympathetic to my situation than the salons I rang. It's been also at a year now since I lost all of the hair on my head, my eyelashes have totally gone, body hair is slowly going too, although I still have some on my arms and legs, it's patchy. I do try to stay positive but it's hard - I hate it. I know there are worse things - my younger brother has terminal cancer, so I try very hard to keep it in perspective. Anyway let me know how things are with you, it would be good to hear from you. Elaine x

[loobylou122 in reply to Elainejaybird1]

Hi Elaine,

Lovely to hear from you again, well done you for having your eyebrows done you have more guts than me maybe one day I will have them done. I know it is frustrating that we have lost all our hair but what can we do I suppose we have to accept it even though it gets us really down just wished I knew what the cause of it was and how long do we have to wait for it to grow back. I am in my second year now. Sorry to hear about your brother you must stay strong for yourself and your brother. Let me know how you get on with your follow up with your eyebrows hope they turn out good for you and give you some normality, wished I had the guts to do it. Take care and speak to you soon.

Lynda x

[Elainejaybird1]

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

[e-mail]

[mumofn]

Hi my son is 20 and he has alopecia universalis. He has no hair or body hair at all. After a soul destroying hospital appointment where the doc was very abrupt! We decided to try alternative medicine. Anything is worth a try. I did some research into homeopathy for alopecia and made an appointment with a lovely woman who basically said that the 1st thing to do is to cleanse your body from the inside. Everything we talked about at the consultation began to make sense in a weird sort of way. Homeopathy treats the person rather than the illness. If anything it has given him a little bit of hope and something to focus on. It's early days yet and he has started on a 70%alkaline-30%acid diet and also some tablets that she prescribed to cleanse the liver. She believes that the alopecia is triggered by a hormone imbalance which affects the autoimmune system.

Do some research and see what you think. As his mother I feel totally helpless and wish I could swap places with him. He's trying to stay positive and still going out and about but he is really self conscious, especially not having any facial hair. We have looked into the microblading for his eyebrows but we are waiting to see what happens with the homeopathy. It's going to be a slow process but will keep you updated 🙂