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Comment by PamW San Diego, CA, USA on November 12, 2014 at 7:48pm

Donnelley, thank you so much for your information and to everyone else who has shared. Because of your generosity, I have been able to bring the latest info to my dermatologist. Please, ladies from the UK, keep us posted about Dr. Christos and his findings. I participated in his study.

Comment by Donelle on November 12, 2014 at 7:20pm

Hello all and thanks for the welcome.  For everyone interested in my journey I offer the following (which my husband calls an epistle).  For the past 7 years or so I have been seeing Professor Chu, head of the dermatology practice at Hammersmith Hospital.  I was referred to him by my local (Dorset) dermatologist who was treating me for rosacea.  That dermatologist prescribed massive doses of roaccutane (doses so high that my pharmacist thought the script was in error).  It was almost immediately after that I lost my eyebrows. Prof Chu said I had alopecia areata caused by the roaccutane.  He gave me a series of steroid injections in my brow area which did nothing (except hurt like crazy).  When it became clear that that wasn't working he referred me to the clinic at Ealing Hospital.  At this point I only had eyebrow loss, or at least I didn't notice other hair loss. At Ealing they treated my eyebrows with Diphenylcyclopropenone (DPCP), which is a process whereby they paint the brow area with this stuff that results in allergic contact dermatitis. In alopecia areata, it is believed to work by redirecting the autoimmune attacks on the hair follicles, allowing for re-growth.  All it did for me was replace my eyebrows with scabs until they healed, at which point it was time to administer the treatment again.  I did this for over a year before I decided I had enough.  After I stopped the DCHP treatment I noticed that my hair was receding. Prof Chu's registrar or research assistant, Dr Thivi Maruthappu, immediately recognised that my hair loss was not areata but FFA. Thanks to Thivi Prof Chu referred me to Dr Ali who did a biopsy in which confirmed FFA.  

Dr Ali has me on a combination of hydroxychloroquine, Etrivex shampoo (Clobestasol) and rogaine 5mg twice daily. Her approach is to slow the progression of the disease until it burns itself out. Unfortunately, in my case while this treatment may have slowed things down the disease has continued its relentless course.  I have been given literature on cyclosporine and will see Dr Ali again the first week in December to discuss this and other options. She did say that at some point the disease will go into remission and that once there is no inflammation present a hair transplant will be an option.  I have little hope for this, however, as I have never read of anyone whose FFA has burned itself out nor have I read of anyone who has had a transplant.  Sas, you are the first, and I do hope your treatment is successful (although I am unclear whether this is a stem cell or hair transplant you are having). Also, Sas regarding minoxidil, I urge you to have a look at the CARF website, especially their newsletters, in which the specialists treating this disease all prescribe minoxidil.  In my experience it does produce baby hairs, but for these I am VERY thankful.  I have lost hair mostly at the sides, about an inch (possibly more) and the hair on my forehead is just beginning to thin out.  My scalp itches and burns, and is red and inflamed in places.  My hairstyle mostly hides my hair loss and I draw my brows on each morning with Stila brow pens.  I have lost all hair on my arms and legs and my eyelashes are very thin and spiky.

Forgive me for this has been very long and I really have no good treatment news to report.  I can say that I am very much looking forward to meeting Catherine and anyone else able to make it to the conference on Friday.  This site is amazing and for all your stories I am very grateful.

 

Comment by jess on November 12, 2014 at 4:18pm

I am very excited about the transplant!! I hope it works for you Sas and hopefully for the rest of us

Comment by Sas Holland on November 12, 2014 at 3:27pm

Hi Donelle, i live in the Netherlands and are also not able to attend theCarf meeting unfortunately.
But I am also just like Jen interested in the trestments you had
Here's an update frommy second visit to my dermatologist:

I visitedmydermatologistyesterday for theresults of my biopsy. It isdefenitely FFA but in a very mildstadium now.
They give me the chouce to start with Cyclosporine for 4-6 months while they monitor my bloodpressure, kidney and liver securely.
I then can have a small trial stemcell transplant. The cyclo is to prevent that the FFA willbe reactivated by the trauma of transplantation, (Kuppner effect)sine they find cyclosporine works thebest against the lymphocytes that are fighting and killing the hairfollicles.
He assures me that this trauma of transplantaion cannot trigger FFA all overmy head or in other areas then where the trauma is.
After this small testarea transplant i have to take thisCyclosporine for another couple of months so the new hair won't be rejected.
I have a week to decide if i want to take the cyclosporine or not. Another option is to just take the cyclo and not have te test transplant and last option is to take nothing. He says minixidil is useless because it only works for male hormons and this FFA lymphocytes are not responding to it and also that you will only get a few babyhairs from using it, not much more
I am very interested in hearing stories about the cyclosporine, what it did, did it stop or slow down the FFA and what were the side effects?

Comment by Jen S. on November 12, 2014 at 2:21pm

Donelle - unfortunately I live in Atlanta, Georgia.  So, getting to the CARF meeting is not possible.  However, given that you have had FFA long-term, I am sure a bunch of us would love to hear your thoughts on the treatments you've tried.  Has anything proven helpful for you?  Thanks!

Comment by Catherine on November 12, 2014 at 2:10pm

Hi Donelle,

I will be there! I look forward to meeting you.

Catherine 

Comment by Donelle on November 12, 2014 at 11:15am

Hello all

I am new to this site but not to FFA, which I have had for about 6 years.  Of course it was misdiagnosed until two years ago.  I have been through the mill with various treatments, but thankfully now I am being treated now by Dr Aisha Ali at Hammersmith and Charing Cross Hospitals.  I would be happy to talk with anyone about my condition and treatment etc but the main reason I'm writing today is to encourage anyone who possibly can to come to the CARF meeting in London this Friday.  I have just been on the phone with Dr Christos Tziotzios who will be one of the presenters.  Many of you know he is one of the foremost researchers now looking for a possible genetic cause for FFA.  He said last year there were about 80 participants but the conference was held on a Saturday whereas this year's is on a Friday.  So please do come if you can.  I would love to meet some of you there!

Comment by Liz on November 11, 2014 at 5:16am

Hi

I had a phone call regarding the CARF meeting in London next week. Apparently there has been very few people singing up to go along. I am unable to due to work. Is anyone else going? Can anyone else go? xx

Comment by Sas Holland on November 10, 2014 at 11:26am

Thanks very much, Anne Louise for uploading this Carf document, very usefull for new members like myself!

Comment by Anne Louise on November 10, 2014 at 10:25am

Since there are new members here I thought I'd post a link to the most recent CARF (Cicatricial Alopecia Research Foundation) newsletter. This organization is a great resource for information and support groups.

http://www.carfintl.org/_docs/newsletters/CARF_Newsletter17_Nov2014...

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