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I have been diagnosed with frontal fibrosing folliculitis. For almost three years my hair has been coming out around the sides and front of my hair. SLowly I am balding. My dermatologist says my hair follicules are scarred, thus they no longer are present. What can I do to stop the inflammation and what can I do to restore my hair follicules? Is there anything I can take internally to stop the inflammation? My doctor suggested plaquenil or prednisone, but these remedies seem worse than the disease. I am post menopausal, have high blood pressure and am 58 years old. What can I do?

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I wonder if topical minoxidil solution may be helpful in preventing further hair loss. This is sold over the counter at the drug store. I think it is well worth a try. Fish oil and aspirin are anti-inflammatory, and they are relatively safe compared to prednisone. Corticosteroid cream may also be helpful.
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I was diagnosed with the same condition in June 2009 when seeing a dermaotlogist about my facial skin and eyebrows. I have itching in the eyebrows and when I scratch them the eyebrows fall out. I told the dermatologist that I had the same itching in my hair and he diagnosed FFF. I had been losing hair for some months and think I had had the condition for about a year before it was diagnosed so I have not lost too much hair opr follicles. I was told there is no cure for the condition nor can the damage to the follicles be reversed.

I used a topical steroid called Dermovate on the affected area for 2 weeks then 20mg of prednisolone and the topical steroid for another 3 weeks. I thena treatment of steroid injections into the scalp along the affected area and into the eyebrows - 60 needles, done under sedation. Parts of my scalp resisted the treament so I had a second lot of injections. All the time I was on 10mg of prenisolone. After the 2nd treatment the condition had improved remarkably although I still suffer from itching. I am now reducing the 10mg by 1mg a week until the course is finished. I visit the dermatologist when the dosage is at 6mg. He hopes by then the condition will have burnt itself out. If not, then I will need further injections.

In total weeks, I will have been on prednisolone from 17 June to 31 December 2009. I reach teh 6mg at the end of November. I hope the treatment will be succesful and would suggest you speak to your dermatologist about the treatments I have had. Side effects of the prednisolone that I have area tiredness and some fluid retention,but I am told these will are stop when I come off the steroid completely.

I hope this may be of some help to you. I know how d pressed I was when first diagnosed and because it is such a rare condition and not much is know about it, there are not many treatments for it. The injections I had have never been used for FFF in the UK before but has been successful on other forms of alopecia so I am a guinea pig for the doctors.
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