Comment

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.

Comment by sammi on April 13, 2013 at 1:55pm

Comment by PamW San Diego, CA, USA on April 13, 2013 at 9:52am

Judy, check your email. Lacee as soon as Judy and I narrow down a date, I will email you.

Comment by Simone NJ USA on April 13, 2013 at 8:58am

Thanks Pam/Debs for the info...

Comment by Debs on April 13, 2013 at 5:42am

Simone, same as Pam has just said. A derm gave me clobetasol last November, he said use it for 2 to 3 weeks every 3 months if I had redness/itching. I only used it for 7 days just to see what would happen but I don't thankfully get any redness/itching so I never used it again. Dr Harries has confirmed it does not do anything for hair loss.

Comment by PamW San Diego, CA, USA on April 12, 2013 at 10:28pm

My doctors have cautioned me to be careful with the clobetasol because it can cause skin to thin.

Comment by Simone NJ USA on April 12, 2013 at 10:05pm

Hi Debs:

Do you know if there are any possible side effects from usung Clobetasol?

Comment by Judy on April 12, 2013 at 7:31pm

Lacy, It would be great for the 3 of us to meet up. When Pam gets our messages let's make plans.

Comment by Bernadette on April 12, 2013 at 7:04pm

Aimee, thank you for the YouTube info. Debs, I will keep the group posted on the wig search =).

• ‹ Previous
• 1
• …
• 427
• 428
• 429
• 430
• 431
• …
• 506
• Next ›
• Page