Comment

Comment by CJ- Christine from Ottawa Canada on November 28, 2012 at 8:01am

Hi all,
In a way, having all these different treatments makes perverse sense. They don't know much about the disease, so they are using agents that have worked somewhat for some people.... That' s the first thing. Secondly, even if they knew lots about the disease, in the same way they know lots about psoriasis, different treatments work differently on each patient... Which is why it's so important to have all options known and available...not always the case.
I am often disheartened that so little is known and that there is so little research happening. On the bright side for us, our numbers are growing, which is too bad for the new folks being diagnosed but better for us all. More patients means more commercial interest in finding a treatment or cure. But of course it will take time.
We are starting a cicatricial alopecia support organization in Canada with our second meeting next month. Are any of you part of local/ national groups?

Comment by Debs on November 28, 2012 at 2:49am

I agree totally with you Pam, we are all on different medication and even when we have the same drug we are being given different instructions on how often to use it... Look fowards to hearing from yourself and Celia and see if there can be some definitive treatment plans for us all to follow. Best of luck to you Pam & Celia. XX

Comment by PamW San Diego, CA, USA on November 27, 2012 at 10:10pm

Celia, good luck to you on Thursday! Wishing you all the best. One thing that I find amazing is that there are 20 members in this group and there aren't two of us who are getting the same treatment. Some doing nothing, some using clobestasol, some on plaquenil, some using minoxidyl, some taking finestaride, some on prednizone. No wonder we can't figure out what works and what doesn't! I am seeing a new dermatologist at UCSD on Friday morning. It will be interesting to compare what he says with what Dr. Harries says. In any event, can't wait to hear from you Celia!

Comment by Debs on November 27, 2012 at 9:23am

Celia, good luck on Thursday. Thank you for taking our questions with you to Dr Harries. I hope you are given something to help you with FFA. Thinking of you. XXXX

Comment by CJ- Christine from Ottawa Canada on November 27, 2012 at 12:04am

Also I'm now on finasteride, which my insurance company won't cover since it is a drug for men.I just started so it's too early to tell if it helps.
The whole thing is just too much somemes, it's hard not to feel stressed. That said, I'm at a conference with a bunch of other patient advocates from organizations repressenting a broad spectrum of diseases and I can honestly say that if I had to choose a disease in the room, I'd choose ours.

Comment by CJ- Christine from Ottawa Canada on November 27, 2012 at 12:01am

Hi all,
I've been too busy with work lately. I'm not sure if I posted that sometimes people with FFA also have the texture of the skin on their face change... It's gets bumpy. I've got this happening to me. I've had two different docs prescribe two different things. For that .. Metrogel and retinol a . I'm alternating.... Also I had one candadian hair expert tell me minoxidil 5% foam is a good idea and another told me not to bother, yet there is some research that suggests it could help. I'm about to start to try it.

My eyelashes are thinning,and my eyebrows are essentially gone. I'm having them tattooed this coming Friday. I am excited ( perverse, I know) by this.

Comment by Judy on November 26, 2012 at 9:54pm

Anabela, I agree that trying to be calmer and less stresed helps. The internet keeps recommends: Sleep, Good diet, excercise and LESS STRESS. Of course that is recommended for eaverything. My dermatologist said FAA usually happenned to post-menopausal women??

Liz, my hair is also getting thinner but not frizzy

Anyone have eyelashes getting thinner???

Celia, if you are still home my question is about shampoos-
It seems to me that shampoo would be a major treatment.
Good luck on your trip and many thanks for representing us.

Comment by Anabela on November 26, 2012 at 6:28pm

Hello Celia.
There is one thing I would like to know and that no derrmatologista replied today:
- "What is the duration of the disease, from the beginning to the end of the fall"?
Thanks for the sympathy and kindness.

Comment by Anabela on November 26, 2012 at 5:55pm

Hello Liz, good night.
My hair is now a little thinner, but I do not feel crisp. Do you feel inflammation of the scalp, followed by a slight scaling and fall? I never had inflammation or scaling but dropped me in it. Are you taking hydroxychloroquine? I'm also in premenopausal women.

Comment by Anabela on November 26, 2012 at 5:37pm

Judy, good night from Portugal. Thanks for your words. When I take hydroxychloroquine, slows the fall. The same happens when I'm calm and relaxed. When I get stressed and depressed, the hair falls again. I take vitamins every day for hair, to keep strong to cover the flaws of the head. I wash the hair with a mild shampoo for frequent use.

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