My hair piece cost £345 - quite a lot, as it was fine textured and wavy real European human hair, and custom made - so more expensive than an acrilyic wig, but less expensive than some human hair wigs. Every day I am grateful to whoever grew that lovely hair which I am now styling and wearing!!

Thank you Pam and C for your very kind welcome. I would be interested in meeting up with you all. I am also very interested to hear more about your hairpiece. I have thought about wigs but ¾ of my hair is still fine and it seems silly to shave it off. You have certainly given me lots to think about. thankyou

I have just received an email from Dr Tziotzios ( the doctor from Guys hospital)asking if he could ring me to discuss medical history. I just wanted to check with you ladies that this is all genuine. I know it sounds silly on my behalf but you hear about so many people trying to get information over the telephone.

Hi All,

So good to read these comments. I also have had an email today from Dr Criztos and quite excited to have a chat with him.

Would also be good to have a get together at some point. £345.00 for a hair piece to restore confidence sounds like a bargain.Claire.

Thank you ladies for your reassurance, I am speaking to the doctor on Thursday,  and I agree £345.00 sounds good to me. If you ladies do arrange a meeting I would very much appreciate an invitation, if that isn’t being to forward.  

Your support is very much appreciated. Meme

Hi Meme - definitely not forward at all !  Anticipate trying to agree a date in March that will suit everybody. 

Count me in as well.

Claire.

Good morning ladies.  Re . getting together - I wonder if the week beginning 17th -  22nd March inclusive might be good ?  If you could let me know which of these days you are free, then I hope that there will be one day that suits all.  I will then e mail my location with directions if you don't have sat nav.  Looking forward to a calm Spring day........Celia

Have had a reply from Caro who can only make the Sat - 22nd March, but she would be OK for the following week.  She is keen to see Pam as we all are with the amazing new hairdo.  May I suggest Sun 23rd - Thursday 27th inclusive, unless you can all do the Saturday 22nd - that would be great.  We didn't see you last time, Paula and I know weekdays are difficult for you, so perhaps a weekend might suit you better.  I am about 4 miles off the M40 for those of you who didn't know.

Hi,

I can do Saturday 22nd March for lunch but need to be back in Kent about 5ish for a dinner party. Alternatively I can do Sunday 23 or Wednesday 26th.

I hope we can sort out an agreeable date.

Claire

Claire.

I am OK for all of that week commencing March 17th including the Saturday 22nd March.

Hi

I would only be able to make a weekend. I am ok for 22nd or the 23rd. I live in Suffolk but my son lives in Gloucestershire and we try to visit him regularly, so I could combine the two, leaving husband with son.

Meme

Great response thank you all. So right now we have the 22nd as the favoured date. x

Jules, Pam, Polly, Caro, Claire, Meme are all OK for Saturday 22nd - that's brilliant !

Thank you so much for organising this, looking forward to meeting every one.

Meme

You're very welcome !

Really looking forward to seeing you all. Thank you so much C for the invitation X

I would have loved to join you ladies because everyone is so supportive (nothing like inviting oneself)!

I'm on holiday from 19th March but would really like to be included if another get together is planned, please.

Have a great time

Love Jean

x

Jean - we hope that 22 March will happen,  but I would hope that we can arrange a Summer 'do' too without The Weather !  It would be great if you could be there.then.  It's hard to have 100% of the group in the SE at the same time  - hope you have a wonderful holiday ! Best wishes, Celia.

I wonder if any of you have ever taken prednisone and if so what were the side effects - did it help. I have been prescribed this as well as a steroid lotion the be used daily. Any comments please ? Thanks !

Thank you Rebecca - I am loathe to take it anyway ! I just googled it and one of the things is that if you are in contact with anyone who has shingles you must see your GP immediately !!!!!! My friend currently has shingles............I have gained weight since being on hydroxychloroquine, by the way, wonder if that is the case for any others. Pred apparently may increase the size of the neck and give you a bit of a humped back - oddly enough the friend with shingles was on steroids a few years ago - she put on weight and esp gained a hump at the back of her neck - oh my goodness - is it worth it !!!! Thank you !

I have had very severe skin allergies in the past and had to take this drug. It does cause weight gain but I lost mine. I have had a steroid injection recently without the side effects. It also made my skin feel like crepe paper which was horrible. I would not take the oral version again.

C, My doctor has not prescribed oral prednisone, but he did say that he wanted me to call immediately if I have a flareup so he can put me on a short-term steroid (such as prednisone) to stop the hair loss as soon as possible.  There is prednisone in the topical that I'm currently using.  It seems to help, so I plan to keep using it. 

Regarding weight gain:  I lost weight when I was first diagnosed because I simply couldn't eat anything for the first month.  I have gained a few pounds since I started taking Plaquenil, but I blame myself for that.  I used to be a fitness maniac, but I just don't seem to be as interested in exercise as I was before my diagnosis.  I think feeling sorry for myself at times may be another side effect of the ffa.

On a different subject, has anyone else noticed dark circles under your eyes?  It seems like mine are much worse than ever, even with a full night's sleep. 

Annie ! Get back on that horse, as they say ! Try to get back to your exercise regime - you know it gives the feel good factor ultimately, gets the circulation going, helps keep blood pressure in check etc etc  I think the feeling sorry for oneself with FFA kind of goes with the territory sometimes, and you mustn't feel bad about being down - it happens. I saw the dermatologist today and before I got up I was in shreds !  Anyway I gathered myself up and got through the appointment, followed by a little bit of retail therapy.  How much hydroxychloroquine are you taking ?

Polly that sounds good that the inflammation on your scalp is a little calmer.

I love your new hairdo in the picture by the way !!!

Paula, sorry to hear of the weight gain - that's not much fun.  It was your derm who I saw today, by the way.

Claire - you said about the crepe paper effect - was that from the injections ? I have a ridge now at my hairline and vertical veins running about an inch down my forehead - OK until the wind blows the wrong way, but I would not have them again.

Hello all

I met Dr Chris at Guy’s hospital yesterday for a formal diagnosis and to be officially entered into his research programme.  I have had FFA for 10 years and have now lost about 3 cm. The only Treatment I have ever been given is Nizarol shampoo which I find keeps the inflammation at bay. We did briefly discuss steroids but it was decided not to do ahead with anything. I do believe that if he thought anything could help he would have prescribed it there and then. I was just happy to join the research as I know my father and aunt had alopecia but so far neither of my children are showing any systems but that’s not to say it couldn’t miss a generation, to any future grandchildren.

I would love not to have this condition but I try and put things in perspective. I have good days and bad days (don’t we all) but I am mainly positive, at least I’m not in pain or feeling unwell.  I just look a bit odd. And if that’s how people judge me then they aren’t worth knowing.

I am just so glad I found this website and all you ladies to talk to.

Best wishes to all and looking forward to meeting everyone

Meme

Hi Again,

I had the injection in my backside and have had no problems from that. I took oral steroids for about 6 weeks and noticed the skin all over my body felt very papery. That however was about 2 years ago. I would not take oral steroids again if I can help it.

On a different question does any one else notice any difference to their finger and toe nails? Mine have just started to flake and appear very dry. Claire.

Good morning ! Claire - I take a hair skin and nails supplement and so this has improved the condition of my nails.  I always wear rubber gloves when washing things in the kitchen - this is good practice too I think. 

Meme I am not sure where you live but several of us are getting together towards the end of March - I am near Junction 2 of the M40.  If you are able to join us you are very welcome and of course anyone else.  There are ladies travelling from Birmingham area and Brighton area too as well as more 'local' ones. x

Meme - I am not concentrating - silly me - you are coming over - sorry !!  I shall blame my forgetfulness on being a little lightheaded (in more ways than one.....) after the gym !! x

No problems, 2 invites, how luck am I, all bring my alter ego with me.

Claire: My nails are very ridged and not very strong I would be interested which supplement you use C 

meme

Hi Meme,

I am not taking any supplements other than Calcium and Vit D as I have weak bones- maybe I should start taking one!! Where are you based Meme? I live in East Sussex.

Claire.

Skin Hair and Nails by Holland and Barrett - bought on the internet.  Naturally inspired whatever that means - I bought it in their 'penny sale' where you buy one and get another for a penny (allegedly !).

Hello Claire

Sorry for the late reply, had to take daughter to the eye clinic. I live in Suffolk near Bury St Edmunds.

Will look into the products mentioned. When I met Dr Chris he took a file of blood to check my iron and other vitamin levels. It will be interesting to see the results.

meme

Dear MJ,

I also take antihistamines every day and have had allergies all my life. No one has ever found out what causes them. On 3 occasions I have been in hospital and they tell me it Idiopathic anafelaxis- very frustrating. Maybe this would be something to discuss at the get together?

Hello C

I would be interested to hear about medication that everyone thinks has or hasn’t worked. Also ideas and experiences on how to deal with the hair such as weaves, wigs etc; it would be good to get everyone’s thoughts. 

meme

Hi Debs. I wasn't born by C Section and neither was my mum x

Hi Liz - are you joining us on the 22nd. Celia

I would probably endorse the anti-biotic theory. Oddly enough, some of us have been prescribed these in the cocktail of drugs we are taking. I am beginning to wonder whether the 'cocktail' probably exacerbates the condition, although I understand some of us feel the condition is better since being on the drugs.  The question which the derms cannot answer, of course, is whether the drugs have helped or whether the condition would have improved anyway.  What a conundrum ! x