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Comment by Maz on March 8, 2016 at 9:29am

Well Gai, Don't be deterred by that sort of dematologist. But in saying that I think I understand their attitude.  So far, it seems that what we have can't be cured. They don't think that they can do anything for us so they dismiss us. Not fun. My daughter hasn't, so far, looked into any sort of hairpiece. She even pulls her hair back into a bun or ponytail. I bring my hair forward to cover the bald strip and I think that's the best solution while it works. When/if that stops being effective a topper may be enough. I think a wig would be overkill when there's plenty of good hair from behind the ears. I have looked at toppers on the internet and have ordered one from China for a less than five dollars that looks pretty much like the expensive ones. I don't expect it to be right for me but I want to get more information before I have to work up the courage to go to a wig shop and try their solutions. Medical wigs or hairpieces are going to be expensive.

Comment by Gai on March 8, 2016 at 2:31am

Thank you Maz, I have only seen one dermatologist in Sydney, as I live in the country, and she barely raised her head to look. I just feel frustrated, and unsure of where to turn from here. I will see my GP in next few weeks and go from there. I was also looking for a medical wig or hairpiece, and wonder if your daughter has followed up that line.

Comment by Maz on March 5, 2016 at 6:55am

The east coast of Australia is a huge stretch of real estate. I could get you information from Newcastle. My daughter lives there. She has FFA, among other things, and has seen two dermatologists. The first one tried to tell her she had a type of dandruff. The second one did a biopsy and diagnosed FFA, and three other types of alopecia. He was quite excited about her condition and wanted to take her to an upcoming conference. Of course, my daughter isn't at all excited to have alopecia but at least that doctor is interested.

Comment by Gai on March 4, 2016 at 3:03am

Are there any FFA ladies living in Australia who have good info on Dermatologists and hair loss centres on the east coast. I have been recently diagnosed but think it may go back a couple of years. I just couldn't get my GP interested. It is a very scary thing to loose your hair.

Comment by Brenda, IL US on February 13, 2016 at 11:58am

Thank you Maz and MJ.  I will certainly try the vinegar again.  I was putting a TB in a glass of water but i didn't stick with it long enough.  Good to know that pickle juice will help too.  I definitely believe omeprazole contributes to hair loss.

Comment by MJ on February 13, 2016 at 6:54am

I wonder about the link between omeprazole and FFA. I took it for a year straight before dx. The PA at my first derm pulled out a big book of drugs and side effects. There was a link between omeprazole and Lichen Planus. Not LPP, but still.

Changing my diet to less acidic cured my acid reflux. When an occasional bout hits, I drink a little pickle juice and it halts it immediately.
MJ

Comment by Maz on February 12, 2016 at 9:35pm

Hi Brenda, I got myself off Pariet (same sort of thing as omeprazole). It's definitely not easy because there is a backlash much worse than the original condition when you go off it. You need to wean yourself off it gradually. I found Apple Cider Vinegar very good, just a capful with a sweetener in a glass of water with meals, and chewing gum whenever I got heartburn. There's lots of information and advice on the internet. Worth a look. I am so happy to be off that drug and have a digestive system that works just fine.

Comment by Brenda, IL US on February 12, 2016 at 11:33am

Claire-I'm taking mycofenolate prescribed by my derm.  I've been on it for 1 month and i'm not sure how it's doing.  I also received injections that day.  Two weeks after this the itching started.  Lasted a week or so and then subsided. I'm still losing hair but a little less than i was.  My derm said the mycofenolate wouldn't be as effective as long as i take omeprazole.  I'm having great difficulty stopping it because of GERD.

Comment by claire on February 12, 2016 at 11:11am

Has anyone been advised to take mycofenolate. I have stopped the anti malarial drug after 3 years and my dermatologist is now suggesting I take this immune suppressing drug. I am hesitant but feel the need to try anything to stop the hair loss.
Claire.

Comment by Mel on January 18, 2016 at 10:16pm

I was diagnosed FFA and prescribed meds without a biopsy.

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