Replies to This Discussion

Permalink Reply by Annie on December 13, 2013 at 12:07pm

MJ, Welcome.  I'm so sorry about your diagnosis.  It stinks, doesn't it?  I was diagnosed with ffa  in February & have been taking twice the amount of Hydroxychloroquine you're taking for five months with no side effects - - not even an upset stomach.  I've had blood work done twice  since then and everything has come back normal.  It seems to be the safest way to treat this disgusting disease.  Regarding the Clobetesol, my doctor prescribed a liquid, which is applied directly to the scalp.  It's a little oily, but not difficult to keep off the hair.  It takes months to find out if the drugs will work for you, and I'm still not sure.  I have good & bad days.  I have a three-month check up in January, so I hope to know more then.  Good luck to you.  Try to read as many postings on this site as you can.  I've learned more here than from the three doctors I've seen since my diagnosis.

Permalink Reply by MJ on December 13, 2013 at 1:15pm

Thank you Annie.

Permalink Reply by Debs on December 14, 2013 at 2:00am

MJ, please email me at my private email address and I will send you an 8 page information sheet I have typed up for ladies newly diagnosed with FFA.  This will save you the time and effort of trying to read through our past posts. 

debs-007@tiscali.co.uk

 

This info sheet will enable you to hit the ground running with this condition. 

Permalink Reply by MJ on December 14, 2013 at 9:53am

Deb, I sent you an email. Thank you!

Permalink Reply by ElleMN, USA on December 14, 2013 at 5:28pm

Hi Debs! I just sent you an email too to get a copy of your information sheet. Thanks for compiling everything!

Ellen

Permalink Reply by Chris on February 16, 2014 at 3:07pm

Age: 43
Ithaca,NY. USA
HISTORY: approximately 2 years ago I noticed what I thought were just pimples along my frontal hairline. At first my GP thought it was a fungal infection, and then a bacterial infection. It would clear up with antibiotic ointment for a while and then come back. Around this time my eyebrows started getting patchy. I didn't have any idea the two were related. I just lived with it for a long time until I really noticed how much my hairline was receding. I finally when to the dermatologist, and she thought it was a form of scarring alopecia right away. Follicle biopsy confirmed it. Based on the pattern of loss I was diagnosed with FFA this summer. I didn't want to go on any immunosuppressant medication, or meds that would have significant effects on my health. I started using a high potency steroid foam and ointment, but I didn't see any real improvement in the scarring inflammation. My dermatologist told me it is an autoimmune disease. I have at least an inch 1/2 of recession of hairline all around the front. I've lost most of my eyebrows, and also all the hair on my arms.

Topicals: I stopped using all of the topical steroids and stated using Nizoral shampoo, and a 2% salyasitic gel topically daily.

diet: I decided to start looking at this from more of the autoimmune angle. I went gluten free, and have been for about 4 months

Hair care: My hair is really curly, so a good cut helps hide some of it. Sometimes I use Toppix hair building fibers to make my hair look fuller, but nothing hides my bigger forehead except some bangs.

I've gotten better at penciling and powdering in what is left if my eyebrows.

Coping: This sounds weird, but I take pictures of myself with my eyebrows off and hair pushed back s a way of confronting the hair loss. It makes me feel a little more powerful to look at the current state of affairs without judgement.

Success: After 4 months of gluten free, the Nizerol shampoo and salyasitic acid gel, I've seen a very significant reduction, to almost elimination of the scarring inflammations. I know I can't get back what I've lost, but I'm hopeful that I'll continue to see improvement.

Permalink Reply by MJ on February 17, 2014 at 8:30am

Chris, thanks for sharing your experience with FFA. It is encouraging to hear that you are stabilizing without the use of the steroids. I have been on an anti inflammatory diet and have been 98% dairy free and 95% gluten free. I am going to try to get to 100% gluten free..it is not easy!
MJ

Permalink Reply by Debs on February 17, 2014 at 10:49am

Hi Chris can you please tell us all the name if this gel you are using, I have not heard of it before and am very interested. Thank you xx

Permalink Reply by Chris on February 17, 2014 at 6:27pm

Hi Debs, I'm not sure if what I posted before got to you. This site is a little complicated;). Salicylic gels are pretty common in acne medications. It's a beta hydroxy acid. I use Paula's Choice 2% gel, but I've also used Clean and Clear spot treatment. Most over the counter gels and treatments are 2%. Just look for 2% salicylic acid in the list of ingredients. Salicylic acid is basically what is in aspirin. It's an anti inflammatory.

Permalink Reply by Debs on February 18, 2014 at 5:16am

Hi Chris thanks a million for this info. It is so great that we can share advice like this.

Permalink Reply by dee on March 26, 2014 at 10:58am

8e Age 63

Scotland

History: first noticed summer 2012 .diagnosed Jan 2013. Progression slow. About egg sized patch but lots of inflammation. Very little itching.

Causes: no idea. Had very traumatic bike accident 5 years ago ?????

Medications. Initially synalar gel( topical) and Plaquinil plus iron supplements. After 3 months : Prednisolone  and Azathioprine(steroids) . I chose not to use Rogaine or Dermovate lotion.

Taking turmeric and bromelain daily.

Some days accepting but mostly miserable about the future.

Cut my hair very short to get used to my face not being hidden at all. Colour It

I prescribed myself Turmeric and Bromelain

Positive side effect to steroids was huge improvement with my back problems. Initially steroids were ghastly but dose much reduced . I was lucky and didn't put on any weight

 

Despite comparativly small loss, emotionally it can wreck me. Fear of the future is the worst

. I don't eat meat, my diet is very good and I exercise regularly. Don't know how I'll do the gym thing with much more hair loss as my hair is plastered to my head at the end of a class !

Permalink Reply by Debs on March 27, 2014 at 2:15pm

Dee, I use a buff for my gym work and bandanas.  Or a wide head band that you can buy cheaply in Claire's Accessories shops in the UK would cover up your front hairline nicely too.  Everyone looks a bit scruffy at the gym so don't worry about the look of your hair too much, I think if you have something covering up your front hairline you will be able to relax and enjoy your workout.  Some ladies use a sweat band or headband anyway to keep sweat from their eyes so you won't stand out. 

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