Comment

Comment by Donelle on November 13, 2014 at 4:45am

Jodie I am wondering whether its worth trying it.  Did lab tests show the adverse effect on kidneys/liver?  Did you feel poorly whilst taking it?

Comment by Jodie UK on November 13, 2014 at 4:41am

Donelle
It was about 2yrs ago I was prescribed cyclosporine, I was only taking it for few months and it was decided I was not a good candidate for this drug, as it was starting to affect my kidneys/liver,it's a very powerful drug and I don't think it can be taken long term, but I'm not sure about this.

Comment by Donelle on November 13, 2014 at 4:21am

Jodie I read some of your earlier posts and I'm curious why your derm has changed your meds from cyclosporin which seemed to be working for you.  Is there a limit on how long you can be on it?  

Comment by Jules UK on November 13, 2014 at 4:17am

Just googled Toctino. It's interesting that it's a treatment for eczema, like Protopic. I'll ask Dr Kaur about it at my next appt.
There was a phone conference last night about the Hairloss survey. We're really pleased with the numbers responding and especially FFA. Well done. The survey is staying open until Sunday because of the CARF conference - there'll be opportunity to complete it there.
I can't go but look forward to reading about what's discussed.
X

Comment by Jodie UK on November 13, 2014 at 4:09am

Hi C
I attend Dr Susan Holmes at Glasgow Royal Infirmary, I know she works very closely with Dr Christos as he spoke very highly of her on the telephone, at the time when I was taking part in his study.
I have had FFA for a long time now, and it's so unpredictable I don't know if I'm going through a quiet spell, or if it's Toctino that's making a difference, that's why I would be really interested to know whats Dr Christos opinion this drug. I have not heard of anyone else prescribed Toctino for FFA.

Comment by Celia on November 13, 2014 at 2:50am

Jodie - I wonder which derm you are seeing ? Glad your symptoms have subsided.

Comment by Jodie UK on November 12, 2014 at 8:42pm

Hi all
I have been taking a drug called Toctino for the past 3-4 weeks, so far so good as I don't have any side effects, and no symptoms of FFA since I started taking it, I am not sure if the hairloss has slowed down as its still to soon to know. I would appreciate if anyone going to the carf meeting would ask the dermatologists about Toctino as it is not prescribed in the USA and this concerns me very much.

Comment by MJ on November 12, 2014 at 8:29pm

When I was at my last appointment at the Cleveland Clinic, I asked Dr. Bergfeld if she has seen others who have reached the elusive "burnout." She said yes. I guess if they have, they have moved on and we won't hear from them in this forum. Hopefully one of us will be able to say we have reached that point! It just seems odd that so many have had FFA for years and it has not run its course.

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.

 

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