Replies to This Discussion

Permalink Reply by LVL on December 13, 2017 at 12:12pm

Hi Yummy Mummy. Thank you for your response. I am glad to hear you had a positive outcome with the cortisone shots. It sounds like your dermatologist was cautious and did things properly. Did you find hair loss slowed in those areas that were injected or did it just calm the inflammation? 

Permalink Reply by YummyMummy on December 13, 2017 at 1:40pm

Hi LVL,

Yes, I really trust my dermatologist to be careful and professional - that's really important. It calmed the areas immediately but, in turn, I have kept my hair. I think it is a bit like controlling something like eczema, in that you need to get the scalp back in control and then maintain the improvement with your standard treatment regime. On a note of optimism, I haven't lost very much hair at all since starting my treatment regime 18 months ago (40 days steroids, cortisone gel every day, 250g lymecycline antibiotic every day and these one course of cortisone injections). My FFA is very much 'alive' but calming the inflammation seems to have halted the hair loss. I totally appreciate that it is difficult to take medication sometimes but personally I have decided that I have to follow my consultant's advice and do whatever's necessary to keep my hair - so far, it seems to be working. My consultant tells me that my treatment regime is on the gentler end of the scale - he will only do the minimum necessary to halt the progression and no more. I really wish you the best of luck. I was young like you when I first got FFA (38) and it is horrible thing to have to live with. I have wasted many hours fretting over it but I have decided that life is too short and I've got to get on with things (I've gone from checking my hair every hour to checking it once a month). 

Permalink Reply by Jules Australia on December 14, 2017 at 12:53am

Hi yummy mummy, when you say after calming the inflammation your hair loss seems to have halted, but your FFA is very much 'alive', does that mean you still have some odd scalp sensations or do you have some sort of visual signs to indicate the FFA is still active?

Permalink Reply by Afraid on December 14, 2017 at 2:10am

Hi it was so encouraging to hear a positive outcome.  

My FFA was diagnosed in September but took until more recently for medication to be prescribed (dermovate and Hydroxychloroquine).  I have receding band at front and at around ears and back and balding patches beside ears and overall volume of Hair has reduced dramatically yet dermatologist insists it’s in early stages and was quite reluctant to prescribe the Hydroxychloroquine because such early stages.  I have been trying to be positive but noticed a new small bald patch within the existing Hair at the side... should I be applying dermovate or anything else at sides as I was told to only apply top front.  I think at this rate I’m resigned to losing all my hair.  Does anyone know how quickly this happens?  I thought it was a slowly progressive disease? 

Permalink Reply by YummyMummy on December 14, 2017 at 2:35am

Hi Afraid,

Poor you - the feelings at the start can be completely overwhelming. I felt just like you so I totally empathise. Personally, I would apply the dermovate to the sides as well if you feel these are affected. I was told that the skin on the scalp is much thicker than the skin on the face so it is OK to apply every day for quite some time. If you are concerned, why don't you leave a message for your dermatologist and ask them if this is OK to do? Have you started on the Hydroxychloroquine yet? Don't forget that it might take a while for the benefits to kick in. I take a different medication but it took about 8 weeks for me to notice a positive improvement. Not sure about the Hydroxychloroquine but it might be worth checking with others or on the internet. Please don't panic about losing all your hair just yet. You were only diagnosed in September and only recently started treatment. There are lots of treatment options available if your current treatment isn't quite enough (including recent research around an arthritis drug that has shown a remarkable response according to my dermatologist). And, in the worst case scenario, don't forget that there are some AMAZING wigs and hair systems out there that we cover up what you don't have. I am sure that there are plenty of gorgeous ladies walking around with 'hair help' that we would have no idea about so it is important to stay positive.

Permalink Reply by YummyMummy on December 14, 2017 at 2:22am

Jules Australia,

I know my FFA is still 'alive' because I still have little patches of pinkish skin where there is some inflammation and certainly when I reduced by cortisol gel to every other day, it became more inflamed and sore. However, provided I stick to my treatment regime, my scalp is fairly calm - not really that sore, red or itchy. My derm used the cortisol injections when it looked more inflamed than it used does and that seemed to calm things down again. 

Permalink Reply by Halfbakedwho on December 14, 2017 at 6:13am

I hear you. When I was first diagnosed last spring it was a nightmare, got no sleep.Now 6-8 months later, I have lost a bit more hair, and have days where I feel crazy, and others where I’m more circumspect. I am grateful that this forum exists, and tell myself if need be in the future I’ll go over to London like Minter. I have always had very thick curly hair, and was straightening it with Brazillian straighteners. Those days are gooooonnnn! I’m glad the hair I have left covers the top and sides for now - too soon to do anything but put medicines on and stay positive. Take care of yourself!!!! Don’t give up on taking care of yourself, always, always... 

Permalink Reply by lorrie on December 16, 2017 at 2:16pm

Hi Its the 1st time i am replying it has taken me a while to come to terms with loosing my hair I have frontal fibrosing alopecia I have had cortizone injections over 2 years ago it didnt make any difference.I suppose if I was offered them again maybe I would take them because like you said you just want to stop loosing your hair the injections didnt affect me good or bad I just had them on one side of my head to try. at the moment i am on antibiotics my dermatologist wants to try it to see if it will help to get rid of inflammation around my hair line the positive to me is he said he has seen this burn out I have to wear hair bands now 

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