Replies to This Discussion

Permalink Reply by Beez on December 12, 2017 at 11:53am

I am sorry you are having to deal with this at such a young age!! Have you had a biopsy  to be certain of the diagnosis ?? My understanding is this is the only way to get an absolutely correct diagnosis. I had steroid shots every 6 weeks or so for almost a year. While the scalp irritation and soreness improved, it did nothing to halt the hair loss. It also thinned the skin on the sides of my forehead and I could see ugly blue veins—- a common side effect. When I started noticing small ‘divots’ along the hairline from subcutaneous loss of fat and tissue (another common side effect) I stopped the shots altogether. I figured if I go bald at least I want a pretty head—- not one with deep dents in it. 

I too worried and fretted over this damn disease when first diagnosed. I am lucky because my loss is slow(5 years at least now) and I started with tons too of hair and a very low hairline and a widows peak. I have lost about an inch along the front and nearly two inches along the sides of forehead. I have lost my brows and almost all hair on arms and legs (haven’t shaved my legs in years—- it’s the only good thing about this awful disease) So far only family has reallynoticed the change.

Unfortunately no medicine is proven to cure the hair loss. I have tried everything out there as have a lot of the members here. I think we are all coming to the conclusion that FFa waxes and wanes despite treatments. I don’t want to put any more drugs into my 60 year old body  so I go with healthy eating and lots of prayer.  Eventuallly you will find some semblance of peace .... not easy but time helps. Good luck.

Permalink Reply by LVL on December 12, 2017 at 1:40pm

Hi Beez, thank you for your response and information. I had a biopsy done last year. That is when I got the diagnosis. I had noticed hair loss for a few years before and they originally played it off as nothing. I know there is nothing that will cure it unfortunately. I am just hoping to find something to help halt the loss from getting worse. I already have a very large for head. And it is really starting to thin around my hairline on the front and the sides and that is whats stressing me out. Thank you for the information regarding the injections. It echoed what I have read from other sites and people. I do not think I will go ahead with that. I know there are a lot worse things to have, but as women, hair is part of who we are. Thanks for sharing your story. 

Permalink Reply by Jess on December 12, 2017 at 12:20pm

Hi,

I'm currently taking Dutasteride and using Minoxidil, which I believe has stopped or at least slowed my loss. I've had some success with Elidel, which is an immunosuppressant cream, in helping with the burning sensation.

I also posted not long ago about a study that showed about a 75% success rate in halting the disease with the use of Isotretinoin, a medication for severe acne.

I'm not sure if the information is useful to you since you mention previous medication making you sick, but I thought I would pass it along. I haven't tried the shots, but I have also read negative things about them.

Permalink Reply by LVL on December 12, 2017 at 1:43pm

Hi Jess,  thank you so much for the information. I will definitely mention to my dermatologist about isotretinoin. I haven’t come across that in my research. She wants to put me back on Plaxonil. I had taken it before but it was making me painfully bloated and cramping. I was on doxycycline but it was making me vomit. It’s so frustrating. I just want to find something to help halt the loss. Thanks for your reply

Permalink Reply by Airam-FFA on December 12, 2017 at 12:25pm

Hi LVL

For the reasons that Beez gives, I decided not to accept any treatment that would disfigure my head further; damage my eyesight etc etc. I use a scalp shampoo and ointment a couple of times a week to help with the itching and hair loss - but - the itching and hair loss continues. :( I try to eat healthily and take Turmeric, which is good for helping with reducing inflammatio. 

Some people have had some success with stopping/reducing hair loss but I don’t think there are very many.

xOx

Permalink Reply by LVL on December 12, 2017 at 1:47pm

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 than good. I know there isn’t much we can do and everyone is sort of grasping at straws. It’s hard to accept at any age but being 34 I feel like this is very young to deal with. It’s hard no matter what though. Thanks for your input. 

Permalink Reply by Jess on December 12, 2017 at 2:24pm

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 effects at all with the Dutasteride, and I feel like the risks with are pretty minimal as long as you don't get pregnant. Of course, there's not a ton of research on it being used with women.

Permalink Reply by LVL on December 12, 2017 at 2:58pm

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 frustarting that she doesn’t know much about it either but is trying to help as best she can.  I would love to speak with a doctor who specializes in FFA. Thanks Jess

Permalink Reply by Afraid on December 12, 2017 at 4:11pm

Hi 

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 whole thing.  I have been prescribed dermovate scalp solution and Hydroxychloroquine which I have taken for two weeks. My hair loss seems rapid.  I scan the Internet  constantly determined to find some information about positive outcomes .... sadly I rarely see a positive post outlining how the person has mAnaged to halt or slow down the progression of loss.  If the research suggests roughly 30 % of people respond favourably to Hydroxychloroquine I dont know where to find them on the Internet!  My reading suggests a higher percentage respond to the type of medication you are taking. My dermatologist seems to think I am in early stages... if this is early i can only but pray!!  In desperation I went to a wig shop the other day! Let’s start a campaign to find those people with stories of success to give us some hope. I am going to yoga, I meditate, I pray and I went to see a hypnotist the other day.  I constantly say thanks for my gorgeous son and husband but sometimes I am overwhelmed by feelings of panic and dread for the future.   I hope for divine intervention. 

Permalink Reply by Airam-FFA on December 13, 2017 at 12:03am

Hi Afraid 

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 it will reveal something to help with halting hair loss.

I also wonder about those who have successfully halted this condition - they wouldn’t have the need to be on a website like this.  Also there will be those, I suppose, who have never known that they had FFA, as their hair loss might have just stopped getting worse. Those people might be worth doing research with as they might have anti-bodies or whatever that fights FFA. 

O! That the researchers find a solution to this condition very soon. 

In the meantime we can only try to stay positive.

xOx

Permalink Reply by Afraid on December 13, 2017 at 4:31am

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 positive findings to report with regard to future treatment, unfortunately he wasn’t at liberty to provide any information at this point in time.  Let’s keep our fingers crossed. 

Many thanks 

Permalink Reply by YummyMummy on December 13, 2017 at 4:16am

Hi LVL,

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 needle) and it did what it was meant to do i.e. calm the patches that were red and inflamed. Bizarrely, it does leave little dips in your scalp (I couldn't see them but I could feel them) but that's normally apparently and it goes off after a few weeks. I would recommend that you give it a go. Provided you are being monitored by a trained professional, it is unlikely that you will have any really bad effects. My dermatologist wouldn't give them to me again when I went for a follow-up 3 months later because of potentially thinning of the skin but, as a one-off, it did the trick for me and I have suffered no ill effects. Good luck.

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