Frontal Fibrosing Sucess and Burnout Stories

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Frontal Fibrosing Sucess and Burnout Stories

A site dedicated to tracking success separate from a broadly focused site on FFA. When people are new to the diagnosis and searching for info, the success side of things is elusive while the dark side is at every turn. I think this is in part because with success, one moves on. I want to make a plea for people to leave their good stories --- timeline and treatment --- here as those of us who are early in the process need the hope and understanding that success and burnout do happen.

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Latest Activity: Oct 20

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Comment by Louise on February 22, 2019 at 3:00pm

Hi,

I don´t know if this a success story yet, BUT after 4 weeks on Metotrexat, a strong immun suppressive drug, there is no redness on my scalp, the bumps are more or less gone  I went to my hairdresser the other day and she noticed that my scalp, for the first time in three years,  almost looked quite normal.

I have lost a lot of my hair the past three years and it takes a lot of time every morning to fix my hair with hair fibres, color and hairspray. I barely can cover my bald spots on the crown, It is awful. My dermatologist has adviced me not to use hair pieces, as they will couse further hairloss.

I will also add that I have been on Tetrycycline, Finasteride and Plaquenil for the past three years and these medications haven´t stopped the hairloss neither the inflammation. For one year I tested AIP diet with no success.

My hope is now that Metotrexat totally will stopp the inflammatio. I will know for sure on my next appointment i April.

Good Luck

Louise

Comment by Rose on September 27, 2018 at 10:12am

Joy what type of probiotics do you take and also does the 5 Htp help. Did u have ffa or lpp

Comment by Joy on July 14, 2018 at 6:52pm

After 4 1/2 years I am symptom free - no itching, burning, hairliss - LPP is quiet and no swollen redness at base of hair follicles.  I have done no prescription meds only vitamins. Stay the course - do whatever it takes to manage your stress and take a probiotic - I believe that our bodies were physically and mentally stressed - chemicals and food have contributed as well - I take 5-HTP and probiotic three times a day 

Comment by Kimp on February 24, 2018 at 10:59pm

I’m not sure if this is a success story but I do have some regrowth. My hair is still falling out. And my hairline is almost nonexistent and I’m only 45. But what I’m taking is Dutasteride 0.5 mg 1 per day. Biotin 10,000 mcg 2 tablets twice per day. MSM caps 2 per day. Big Hair supplement 3 capsules twice per day. I just bought Pura D  or Thinning Shampoo and my hair fell out twice as bad! 

 

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