Comment

Comment by KarenGinny - Iowa, US on March 27, 2013 at 11:44am

Hi everyone, I wanted to comment on the steroid injections. When I first went to a dermatologist in Jan 2011 it was because of having a very dry, itchy scalp and I thought it was dermatitis or scalp psoriasis. I first tried Dermasmoothe oil treatment - very messy, and then clobetasol topical liquid and clobetasol shampoo. This helped my scalp. Then I noticed a strip of hair along the back of my neck had fallen out - my forehead and temples were okay at this time. My doctor started giving me the steroid injections to the front of my scalp along the hairline and temples. I had these every 6 weeks for a few months. My hair must have been thinning then but I didn't really notice. After the 5th round of shots I didn't see any improvement and realized my insurance wasn't covering the shots so I stopped getting them, and my itchy scalp was improved so I didn't go to the dr for a while. That fall I noticed my hair at the temples pulling out with hardly any effort and seeing round patches of hair loss on my forehead. I was going through a lot of stress at the time. I was worried about the cost of treatments, but eventually went back to the derm in Feb 2012 with lots of hair loss in my front and temples, got a biopsy and diagnosed with FFA in March 2012. Derm said there was nothing to help since the follicles were dead, and didn't recommend any further treatment. He said there were some RX drugs but didn't recommend them because of side effects. He'd only seen a few women with this problem. So I my opinion the shots I got didn't help as I got them prior to the hair loss and didn't stop it. They were painful, but not terrible and I don't notice any dents, but it has been over a year and a half since then. So now a year later, I've had no treatment other than using T-Gel shampoo to help my scalp, and my hairline has receded quite a bit but seems to be staying the same for now. I do keep thinking about going to a different Derm for a 2nd opinion to see if there's anything I can do to keep the hair I still have. - whether Rx or Rogaine. Sorry this is so long! Karen - Iowa

Comment by Jodie UK on March 27, 2013 at 10:03am

Hi Liz,
The conference in Edinburgh is for all the top derms from around the world, hopefully they can all put their heads together and come up with some effective treatment for us, as this condition seems to be getting more and more common, my doctor also told me a few interesting facts, that she has no Asian women with this disease and also all the women she has seen with this condition are non smokers. do any the ladies in the group smoke?

Comment by Liz on March 27, 2013 at 9:17am

It's great that you are feeling better Debs. It does take time to come to terms with having this condition. I've become hair obsessed since having FFA which is weird because I wasn't when I had more hair! Yesterday I had exam practice which was infront of a camera. Not only was it in front of a camera but I also was able to watch myself. All I could focus on was my shiny balding head. Anyway, next week I shall wear a headscarf.
Good news today that I managed to get a prescription for Minoxidil from my GP. Dr Harries didn't think I could get it prescribed but I did and also managed to get the 5% strength. Fingers crossed it helps.
Hi Jodie :o) The conference in Edinburgh sounds interesting. Can we go to it?
xx

Comment by Debs on March 27, 2013 at 8:58am

I think to be honest I was very down all of 2012 because of this diagnosis, it has taken me a full year to feel in anyway like my normal self again. I have been using this group and the Alopeica UK forum to hold things together and now I am seeing Dr Harries I feel much more relaxed, I can now feel that I am doing everything possible and I can't expect any more of myself. I am trying to be kind to myself. I am giving myself more time, I have resigned from some of the voluntry work I usually do, I am not studying for any qualifications and I am just doing my salaried job (which is part time) and having plenty of lunches/theatre trips etc.. to perk myself up. It is tough having this condition and I think in some ways I have to take it one week at a time but I do feel a great deal better than in 2012.

Comment by PamW San Diego, CA, USA on March 27, 2013 at 6:33am

Hi everyone. My derm specialist at UCSD ( which is a teaching hospital, advised against the shots because he didn't think the results were with the pain and denting. also, both of my doctors cautioned against the over use of Clobetasol because it can cause thinning of the skin. I am interested, Lorn, about minoxidyl. I am more distressed about what is happening in the center part of my scalp than the temples and bangs (fringe). Does it make your hair thicker? From what I read, people don't really experience much in terms of regrowth, but I have heard some favorable comments about minoxidyl making your hair feel thicker. My advice about the eyebrows is to go for permanent makeup, but research, research, research. I really like mine. They are too light right now, and I will have a touch up on Friday. Judy, are you back in San Diego? Do you want to meet?

Comment by Jodie UK on March 27, 2013 at 6:21am

Hi ladies , I have been a member since February and have been reading through all the comments and treatments, I have had FFA for at least 6yrs and been through all the ups and downs and most of the treatments that are mentioned, I think most of the treatments might slow this condition down but I have been told it will eventually burn out??? I was at my derm on Monday and she told me she now has 2 men with FFA and more people are being diagnosed every day. There is a world conference being held in Edinburgh in may and FFA will be the main topic of this conference, so at least it is now being recognised and hopefully they will find a cure, or at least some effective treatment

Comment by Jules UK on March 27, 2013 at 5:22am

Hi all, at my next appt with Dr Harries, I will have the option of injections. Does anyone really think they've helped? From reading posts here, there seem to be lots of cons to the treatment but, as is the pattern with all our meds I suppose, no 'pros'. I'm trying to decide how far to go with treatments or whether to gracefully submit to FFA, which is what hubby has always thought. Just get on with life and not be defined by this condition. Debs, that's what is so heartening about your attitude. It's not easy, but you seem to have a no fuss way of dealing with it. And you look fab! X

Comment by Liz on March 27, 2013 at 4:34am

Hi Debs. Can anyone put a picture of thier indentations online? Only I have an indentation caused by the condidtion itself. I'd just like to compare the 2 :o)
x

Comment by Debs on March 27, 2013 at 3:53am

STEROID INJECTIONS - has anyone that has used the steriod injections on the scalp had indentations that have now filled out and healed. Lots of ladies are reporting dents and marks on their skin after these shots - but do these dents go away after a few months??? I asked Dr Harries and he said it can take several months for the dents to heal but I would like confirmation from ladies that have used them. And OMG we now have 50 ladies in this group - we can reassure ourselves we are accessing info from all over the world in this condition.

Comment by Lorn. New York, USA on March 26, 2013 at 8:54pm

Hi everybody -
Chrisy - My doctor told me to stop using the desonide on my eyebrows because I have been using it for about 7 months, he didn't want to put me at risk for cataracts. I believe it has minimally worked for me (eyerows) as well as the shots - but at the moment, my dermatologist
has stopped the shots as well. My skin has thinned and has become rather dented, At the moment, I am taking 100 mg of doxycyc 2x/day and the 200 mg plaquenel 2x/day. I also put 5% minoxidil 2x/day on eyebrows and behind hairline and hydrocortisone butyrate topical solution behind the hairline 2x/day. Mentally, I feel better about stopping the shots and the desonide - at least for the time being. I think that this regimen has kept the hairloss at bay and some hair on the temple region came back as well as a little eyebrow hair. I see a dermotologist in the clinic in one month and the very specialized hair dermatologist in 4 months.

Regarding my eyebrows, I am taking Celia's advice and looking into tattoos. I thank everyone for their input.

I emailed Wake Forest and put my name on the list. I heard back from them - it hasn't started but they asked me for my info.

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