I’m sorry you’re going through this. It is awful as women. I am 34 and was diagnosed last year. Some days/weeks are easier and some are really hard. I am on plaqueniI. I was taking it last spring but was getting bad cramping.…"
"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…"
"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…"
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…"
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.…"
"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…"
"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…"
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…"
"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…"
"Thank you so much for your reply. I realised I had sounded so negative when I should have been reassuring LVL, my apologies. I have emailed one of the doctors involved in the research at Guys. I was desperately asking him if he had any…"
I'm so sorry that you are suffering and totally empathise with your sense of panic (I've been there too). I have had cortizone shots to my scalp at the recommendation of my dermatologist. It wasn't painful (he used a very fine…"
It is a cruel situation for us to find ourselves in. Also with little success rate with most treatments available. On a positive, the Doctors at Guy’s will soon be releasing the results of their research. I am hoping that…"
I’m also so sorry that you have been diagnosed with this awful condition. I noticed hair loss this year and was subsequently diagnosed in September with FFA & LPP. I am devastated and have become obsessed about the…"
"Yes I agree that it’s scary the risk of affecting your eye sight but it seems like a very low chance. I don’t think my doctor and I have talked about Dutasteride. That is another medication I’ll bring to her attention. It’s…"
"I'm also 34 and have been dealing with this for a couple of years, so I know how bad it sucks. I also had reservations about the Plaxonil and Doxycycline. For me, it's not worth risking my sight. Fortunately, I haven't had any side…"
"Hi Airam-FFA, thank you for your response. I was taking turmeric in tea, I should start doing that again. It is very good for inflammation. I am not going to get the injections. Based on everything I have read it sounds like it will cause more bad…"
I noticed you were asking about Monat. In the top right-hand corner of the site, there is a search bar. You can type "Monat" in and it will also show you other discussions that mention it. Hope that helps.
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