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Comment by Liz on June 13, 2013 at 4:25pm

Hi. I hope that everyone is well. Today I went to my local dermatologist.I hadn't planned to as I see Dr Harries and also wasn't sure about my local derm. However I'm glad that I did. He was helpful and told me a few things that I didn't know. He feels that Doxycycline is the best way forward with this disease if it's tolerated well by the person taking it. He said that less and less people are being prescribed Hydroxcloroquinine (I am not sure if he said that to me to make me feel better about not taking it) He then prescribed me Dutasteride which he said is been used more. However I may have to pay privatly for it due to licensing of the drug. He says that he feels that pollutants such as the spraying of insecticides may well have caused this disease and that they are doing more and more studies. He hopes that towards the end of this year they will be getting as many people involved in the studies as possible. He said that due to the conection with lichen planus they (dermatologists) were hopeing to study hair, nails and the vulva.He seemed very enthusiastic today and when I told him that I had seen Dr Harries becuse I felt that he had left me too long after giving me such life changing news he said that they were now putting on more clinics and that he was meeting ladies with this disease on an almost daily basis. xx

Comment by Celia on June 12, 2013 at 4:33pm

3M DROPS from Philip Kingsley.......... I tried to order some more online today as I have done in the past but was told there has been some legislation banning PK from keeping the 3M drops on the premises. Apparently one can only get these on prescription now from PK's clinic. To do so now I would have to have a follow up appointment (cost about 115 pounds)The drops cost 50 pounds a bottle. Heidi - I remember that you used to use PK's products - any ideas on how to buy the 3M drops ? I told the receptionist on the phone that there was no point in a follow-up apt with a trichologist as I am already seeing a dermatologist. The 3M drops have minoxidil in them - still not sure about trying Regaine, but I know that some of you have had some success with this.

Comment by sammi on June 11, 2013 at 2:58pm

The beautician told me of a product called revitalash for helping eyelashes x An American doctor invented it for his wife who lost her eyebrows and eyelashes to treatment for cancerx

Comment by Debs on June 11, 2013 at 6:44am

EYELASHES - When we met up at Celia's for lunch last month we had a conversation about our eyelashes. I knew mine were not as long/thick as before but since then I have really looked more closely and I can see I am starting to lose eyelash from the lower lid on the outer end. I am going to get my eyeline tattoed in a couple of weeks time so create an illusion of having more eyelashes. I am not going to have a thick line, just something quite subtle to enhance my eyes. I did notice the first time I had my eyebrows done (November 2011) that I did not experience any further hairloss in that area. I don't know if the act of tattoing the skin somehow stimulates it and helps to stop further hairloss but I am hoping that having my eyeliner done now whilst I still have some eyelashes might stop further shedding. I will post photos after I get it done. XX

Comment by sammi on June 9, 2013 at 2:19pm

Celia regarding your post on medication I have been taking hydroschlorquine for over 6 months twice a day and it appears to be controlling my hair loss along with the nightly use of regaine! I never suffered with a red scalp externally so cannot comment on any improvement there! has anyone had a biopsy with Dr Harries he asked me to have one when I initially started seeing him but was too afraid it may leave further damage but have often wondered what it would show?My optican told me not to worry about my eyes and hydrox. he said its very long term use although I would be afraid to come off the drug. Nioxin shampoo and conditioner makes my hair feel much thicker and is especially for hair loss and thining hair, hope this info is of use. x

Comment by Debs on June 9, 2013 at 3:04am

Jane, if you had an upset tummy with hydroxychlorquine sulphate I suspect it is because you had the generic make of the drug, if you ask to try plaqeunil it should not give you problems. This is hydroxycholoquine sulphate by a different manufacturer. I always make sure I get this brand because it is gentle on your tummy. XX

Comment by Alice on June 8, 2013 at 8:05pm

Pam, the thickening shampoo & conditioner that I am using at the moment and like a lot are the L'Oreal EverStrong line in the turquoise tubes. They are sulfate-free, claim to be good for your scalp, and smell like rosemary and mint. They are readily available in most grocery/drug stores, reasonably priced, and often have coupons in the Sunday paper.

Comment by Plain Jane on June 8, 2013 at 7:53pm

Rita, Absolutely get your husband to do the diet with you. I couldn't have done it without mine. Give yourself at least a month to get used to it before you abandon it. And Jules, don't feel like a fraud! I work for a neurologist and there are patients coming in every day who have truly terrible issues to deal with. Like you, I am thankful that I don't have it worse! Celia, I used to be a teacher, too. I don't miss "teaching to the test" but I do miss the total absorption of that life. As a teacher, you're definitely too busy to think about how you look LOL.
Cheers to everyone and thanks again for your support. XX

Comment by Celia on June 8, 2013 at 5:56pm

Good evening everybody. I've just been reading posts from you. If I didn't have communications from you I would hate it. When I was first diagnosed and started this forum - I think my first plea was - something like - 'please someone talk to me' ! Thankfully it worked. There are new members joining us, steadily. Hopefully we can find a way to reduce the inflammation and so - we assume - lessen the effect of scarring and loss of the hair follicles. Jane - you are right - try to - well - not focus on it - as that's not possible - but try to focus on other things, friends,family,other interests.
I'm a retired teacher - I so miss the workplace and the pupils, however challenging, but right now - I don't have the confidence to get back in there !
On the subject of medication that we have been prescribed - please - has anyone been able to attribute any improvements in the condition, - to the use of meds ? x

Comment by sammi on June 8, 2013 at 2:39pm

Information on 7th world congress for hair research abstracts - Jour nal of investigative dermatology sorry no web address but the title will get you there! Trawl through to FFA abstracts!Sammi

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