ChrisC - you can wear a wig over long hair. I use bobby pins to pin your hair up or you can use a wig cap. If you look on Youtube you can see videos of women putting on wigs. I have gradually cut my own hair shorter because it makes putting a wig on first thing in the morning for work much quicker. I just pop it on in a second. I have cropped my hair down short, I have worn my hair this short manner times over the years so this is normal for me and I wear it with a headband, buff, silk scarf - I can look OK like this, so I am not always in a wig.

Celia, I can get a days leave from work and I will definatley meet up in May.

Sammi, I am coming up to Salford this Friday, 19 April, I can meet you for a coffee. My appointment with Dr Harries is at 1.30pm but I will fly up and arrive about 9.30am. If you can get together it would be lovely to catch up.

Pam and Lacy, So sorry-I gave the wrong email. It is
jkeller39@aol.com. Please resend.
My computer has been acting up and every time I got online I would get bumpd off. But I am OK for now - am using another provider.

ANY QUESTIONS FOR DR HARRIES ??

Ladies I am seeing Dr Harries in 4 days time, (19 April) if you have any questions you would like me to ask him please get in touch and I will ask him and let everyone know his response...

Debs, I have a question that my derm can't answer. I think it may apply to many of us. Why is most of the hair loss in places where the scalp does not have the red, bumpy follicle? Most of my hair loss is along the sides, whereas the inflammation and itching seems to be only on the top. If it's all from scarring this doesn't make sense. I'm wondering whether some of the hair could regrow. Or perhaps it's just wishful thinking.

Hi Celia
It's a great idea of yours to organise a 'get-together' and very kind of you to hostess it. I'm sure it'll go really well. I'm sorry I'm a bit too far away to come!
By the way; if anyone else in this group lives in Scotland, I'd be interested to hear from you and find out how you are getting on with your dermatologist/treatments etc.

Hi Celia, 14th May would be better for me as its my sons birthday on the 15th, but if that date is ok for everyone else I will try and sort out cover at work. I will email you to get directions.

I think I can answer the questions for you:

FFA can take between 2 cm and 8 cm of your hairline - so whether you end up deciding to wear a wig depends on how much you lose and of course if you personally want to use supplemental hair.

Redness/itching - I don't get redness/itching other people do, your scalp can itch in one area and not another, it is inflammation that is bad enough to be visible and itching so you are going to lose hair from the area at some time.

Genetic predisposition - FFA has not appeared historically in medical records. Both Dr Harries and a derm at my local hospital have told me that. So, our ancestors did not have this condition. I will ask Dr Harries if there is evidence of the tendency to develop FFA in families. I know Liz and her mum both have it.

Celia, the 15th would be the best day for me... but I can make the other dates.

Hi everyone, hope all goes well for you with Dr Harries Debs! Celia as buses are out of the question how about by train, is there a station near you? I will speak to work today regarding getting 15th off, looking forward to seeing you all face to face!!

Pam thanks for the questions, it doesn't really make sense that your scalp changes over the course of the day... and of course what is his 'plan B' after the plaqeunil... yikes, I hope he has one!!!

Celia thanks for the encouragement. I am going into London tonight to see a classical concert at St Martins In The Field with a few friends. That will take my mind off my appointment tomorrow. Last time I had my head photographed, I imagine I will have another photo taken tomorrow to compare the hair loss, I know there has been some. Tonight though I will be wearing a nice long wig out so I will have hair by whatever means necessary. XXXX

Hello Julie, good grief I didn't realise there was another anti-malarial after the plaquenil... I will be poised tomorrow with my pen and paper so I won't forget anything... XXX

ANSWERS FROM DR HARRIES:

1.. IS FFA HEREDITARY (Liz) - not enough historial data on this condition as it was only first diagnosed as we know in 1994, LIZ Dr Harries would like you to discuss you and your mum both being affected, he could do some comparisons of your DNA to see if it throughs any light on this condition. He is interested in people with mothers with FFA and siblings.

2. RESULTS FROM THE FFA SURVEY (Celia) Dr Harries had 52 patients complete surveys and another 50 patients at a clinic in Sheffield. The stats are still being collated and will be done in 2/3 months time.

3. WHAT CAN WE USE AFTER PLAQUENIL IF IT DOESN'T WORK (Pam) - there are other drugs. Immunosupressants and diabetic meds. The diabetic meds are not often used in the UK but he said they are more commonly used in the USA. Recently Drs are also talking about using CUCUMIN (an active part of TUMERIC) for FFA. It has already been used to treat other autoimmune conditions with success.

4. WHY DOES YOU HEAD BURN/ITCH AT DIFFERENT TIMES OF THE DAY (Pam) there is no scientific reason for this, it is just one of those things.

This was my 2nd visit. I had an eye test and a blood test to make sure I am OK to continue with the plaquenil.. I have another 3 months supply. Please note all Dr Harries ladies on plaquenil - when I went to the hospital pharmacy to get my meds they gave me the generic version, I opened the bag to check my meds and asked them to give me plaquenil because the generic version can give people upset tummies. They changed them. Please check your meds before you leave the pharmacy at the Royal Salford and make sure you get plaquenil which is gentle on tummies.

Hello Debs
Thank you for posting your information from Dr. Harries. It was really helpful as I see my derm in 2 weeks and I now make a note to ask for the Plaquenil and not the generic hydroxychloroquine if she suggests I start this drug. The possibility of a turmeric derived drug is also interesting. Someone in this group some weeks ago mentioned that she was taking turmeric tablets from her health shop. I wonder how soon the cucumin pills will be available and prescribed and if it would be worth trying turmeric in the meantime?
Hope the plaquenil works for you and thanks again for sharing your information.

Hi Debs. Thank you for the information. I wonder if Dr Harries might want my mum to get referred to see him. I shall ask him at my next visit. If he is interested in both me and my mum it might be good if he sees us both on the same day.
xx

I've been taking turmeric capsules for a long time. I think they may be helping but it's hard to know. In the US, you can buy them over the counter at your local grocery store or pharmacy. The last batch I got, I purchased from online from Amazon.com. I do take them with a meal, to avoid stomach upset as from spicy food. I've also found that oolong tea helps with the itching, either hot or iced. I use these in addition plaquenil.

Hi Debs thanks for posting the info, its really interesting about the cucumin I might pop to the health shop today and get some tumeric tablets. Its also a worry about the connection being heriditary, on my first visit to the derm my daughter came with me and that was the first question she asked, I hadn't even thought of it but it was obviously been playing on her mind. But she was told NO it wasn't but other autoimune disease can be. Wether there was not hard evidence as yet and he didn't want her to worry her whole life thinking she too was going to loose her hair. That is one thing which keeps me positive that it is me with this and not her as she is a hairdresser/ beautitian and her hair is so important to her!
Thanks again Debs

Pam, I feel in good spirits after my visit yesterday, just having information is empowevering and makes me positive. I have lost hair in the past few months but that was already on the way out when I started taking plaquenil. I have been taking it for 6 weeks so it will be take a few months to see if it is having any effect. I am heading off to the health food shop this morning to get some tumeric tablets it is worth a try.

Liz, yes I would definately get your mum refered then Dr Harries can do some investigations with you both, he is very interested in looking into the hereditary factor to help understand this condition. There are not many related sufferers around for doctors to get their hands on so to speak.

Rebecca, when Liz and her mum speak to Dr Harries and he does some genetic investigations could your derm run the same tests in Germany so both doctors can contrast and compare the results. If there is the same 'abnormality' in both sets of mother/daughter DNA you could the crack mystery of what causes FFA... or at least point the doctors in the right direction of the genetic component to the condition. xx

www.veganicity.com is a health food supplier based in East Sussex, because the supplements are vegan they don't use lots of binders and the product is well made.

TUMERIC EXTRA tablets are £11.95 for 30 free p&p
Contains: curcumin 95% 200mg, ginger extract 100mg, bromelain and black pepper (piperine) - ginger has anti-inflammatory effects and the bromelain and piperine improve absorption and increase bioavailability of the curcumin. I have looked at lots of formulations online and this is the best I can see in the UK and it is a good price with free p&p.

Thanks so much for the info, I will check this link out.

Hi everyone. Hope that all is well. Celia

Hello all - I'm seeing Dr Harries next Thursday 2nd May - if you have any questions - I would be happy to put them to him. Hope all's well !

Hi ladies. I just finished reading the week's posts. Thank you
Pam and AC for the excellent websites. I will read them tonight.
Interesting. I have been taking strong doses of NSAIDS (anti-imflamatories), for many years as have bad Osteoarthritis - this is not an autoimmune disease like Rhuematoid. But that is why I take any anti-inflamatories that I hear about. The Tumeric I started only 3 months ago - but I have NOT had any inflamation with FFA since then. I also take Ginger and a small amount of some of the other herbs mentioned, plus probiotics.
I recently changed family doctor for various reasons, but because of that, I have learned about several problems I have that I would have NEVER guessed - wonder if they have any relation to FFA? I will mention them in case they may be helpful to anyone. One is severe sleep apenea and one is low cholestrol (way below the minimum) - both of these are fixable but I wonder if they could have any relationship to FFA?
Once I asked my dermatologist why the severeness of my FFA seemed to be getting so much better. I wonder if it is my NSAIDS? Is anyone else taking them? They perscribe them for pain (wihich reduces inflamation in the joints). Curious but I don't know enough to make any assumptions.
Pam what do you think? Also, please check out my April 15 posting for new email address so we can arrange a get-together.