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Comment by Caro UK on April 15, 2013 at 12:06pm

Hi Celia. Thank you so much for the invite. I can only make 15 May as I am working the other two dates. Will be sorry to miss meeting up if that's not going to suit everyone else but can't be helped. X

Comment by Simone NJ USA on April 15, 2013 at 10:55am

Hi Debs:

Thank you for offering to take questions to Dr. Harries...could you ask him if he thinks a person with FFA was predisposed to this hair disorder from birth? My Derm is telling me that it was in my genes & that either was I would have gotten this disorder...also, do you know if the hair loss occurs around the areas where there is itching and redness?

Hope all I well...thanks again..x

Comment by Alice on April 15, 2013 at 8:01am

Debs, I have a question that my derm can't answer. I think it may apply to many of us. Why is most of the hair loss in places where the scalp does not have the red, bumpy follicle? Most of my hair loss is along the sides, whereas the inflammation and itching seems to be only on the top. If it's all from scarring this doesn't make sense. I'm wondering whether some of the hair could regrow. Or perhaps it's just wishful thinking.

Comment by Debs on April 15, 2013 at 7:14am

ANY QUESTIONS FOR DR HARRIES ??

Ladies I am seeing Dr Harries in 4 days time, (19 April) if you have any questions you would like me to ask him please get in touch and I will ask him and let everyone know his response...

Comment by Judy on April 15, 2013 at 12:42am

Pam and Lacy, So sorry-I gave the wrong email. It is
jkeller39@aol.com. Please resend.
My computer has been acting up and every time I got online I would get bumpd off. But I am OK for now - am using another provider.

Comment by Debs on April 14, 2013 at 4:24am

ChrisC - you can wear a wig over long hair. I use bobby pins to pin your hair up or you can use a wig cap. If you look on Youtube you can see videos of women putting on wigs. I have gradually cut my own hair shorter because it makes putting a wig on first thing in the morning for work much quicker. I just pop it on in a second. I have cropped my hair down short, I have worn my hair this short manner times over the years so this is normal for me and I wear it with a headband, buff, silk scarf - I can look OK like this, so I am not always in a wig.

Celia, I can get a days leave from work and I will definatley meet up in May.

Sammi, I am coming up to Salford this Friday, 19 April, I can meet you for a coffee. My appointment with Dr Harries is at 1.30pm but I will fly up and arrive about 9.30am. If you can get together it would be lovely to catch up.

Comment by Lace on April 14, 2013 at 1:23am

Thanks for thinking of me, Pam!

Comment by PamW San Diego, CA, USA on April 13, 2013 at 8:38pm

Hi, Chris. I know how you feel! I think Celia is right. Losing your hair slowly and not having control, or the constant guessing about why one day is better than the next, can drive you crazy! I had one doctor who wanted me on an antibiotic and one who said it wouldn't help. Ultimately, I decided not to take the antibiotic because both were pretty adamant about taking Plaquenil and I thought it wouldn't be good to take an antibiotic for a long time. I did take doxy for 3 months and I am no different not taking it. I think if we knew that we could manage wearing and maintaining wigs, we would all be calmer. I like when you crab, it keeps me from crabbing.

Comment by sammi on April 13, 2013 at 2:00pm

Hi Celia would love to join your group meeting and share discussion face to face! unfortunately I am teaching thoses days,available 10th May to meet anywhere! Or if anyone visits Dr Harries and wants to meet up in the Trafford Centre for lunch, 10 mins from the hospital I would be only too pleased X

Comment by ChrisC. Chicago, IL on April 13, 2013 at 1:59pm

Good afternoon from Chicago,

Question: has anyone taken minocycline?

I have been checking in periodically and my how our numbers have grown! For a "rare" disease there are certainly alot of us. Like you all, I see many hairlines in women in the 40-60 age group that absolutely must have this as well. And contrary to what I thought a year ago when I was diagnosed, the hairloss is not immediate. So I've been putting off the wig purchase for the time being. I've also had alot of practice with my new favorite waterproof eyebrow liner, "Make Up Forever" Professional Aqua Brow. I use the lightest shade and it fills in nicely and is still there at the end of the day (even swimming).

I keep hoping that treatment will do something. I just saw Dr. Barbosa yesterday and I didn't leave with much hope. I'm still experiencing loss and mild itchingat the top of my hairline which—let's face it— once that is gone it is time for a wig. The loss at the sides has really about stopped. She said that in her experience that FFA seems to take a certain amount of hair no matter what!! Am I just slowing down the inevitable and the meds are pointless? Debs has a great looking wig, but I have long hair and I can't imagine adding another layer of hair on top of my hair. Debs, did you cut your own hair short?

Other than Rogaine 5% once per day, I'm currently I am on Plaquenil 200 mg twice a day and she added Minocycline 100 mg twice a day for some added immunosuppresant action (the doxycycline was $300 for 1 month supply so the pharmacy called and she switched to minocycline for $36!) I had asked about Actos again, and she said that she'd prefer to go to Cellcept which is for transplant patients if I wanted to accept increased risk!! She does not believe that thinning the skin with Clobetesol or injections is helping. The Protopic and Elidel are so expensive that I'm resisting paying $315 for one small tube. I have been using samples for the past few months and I'm not sure if the creams are doing anything anyway.

Ok. . . so enough "crabbing". . . I'm just feeling down so thanks for giving me a place to vent. . . I know you all have had these moments too.

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