Comment

Comment by Sad in chicago on July 21, 2015 at 5:32pm

Mike'sDeb:  What are you considering clean eating?  No carbs at all, or just no refined, processed foods.  Have you lost weight?  Do you exercise?  Thanks.

Comment by LittleSadEyes on July 21, 2015 at 8:39am

My recession has sped up hugely recently. My widows peak is going.eyebrows sparser by the day. Scalp embarrassingly visible. I don't understand why its sped up like this. If I look really really close under light there are the tiniest smallest baby vellus hairs on the recession kind of like you get all over your body but dont notice. I'm not really coping.

Comment by Mike'sDeb on July 16, 2015 at 10:55pm

*that should say derm visit update :)

Comment by Mike'sDeb on July 16, 2015 at 10:34pm

Hi All...just wanted to give seem visit update. This has been 6 months since my last visit and 1 year since my diagnosis. At my initial diagnosis it was felt my condition began >1 yr prior and the worst was over. I did have a small area of inflammation and I used clobetasol for several weeks. The usual FFA drugs were presented as options but since I had started a clean eating diet 6 months prior (for IBS) I wanted to wait it out. Side effects of those drugs are frightening. At my next appt 6 months later she felt I was close to "burn-out". She suggested Rogaine which I tried for a while but it became a chore to have to keep using it and it wasn't going to regrow the hair I lost anyway. I do use it on my eyebrows and it has helped. I use cerafill shampoo/conditioner and dense thickening spray from Redken (for hair loss)...gives me nice full hair. At my appt today she told me there is no further hair loss or areas of inflammation. She told me I have a beautiful head of hair with an unfortunate condition. She also said she believes the condition is environmental and the fact I started clean eating and the disease stopped does not seem to be a coincidence. Obviously this can't be guaranteed because so little is known about FFA. She has not seen the disease fire back up after having no activity this long. I am excited about this because it has reinforced that the best gift you can give yourself is live a healthy lifestyle. I see her again in 6 months and I hope for the same report. I will continue my plan because it has worked for me in many ways...lots of other physical and mental benefits as well. I also have a great hairstylist who has been able to conceal the hair loss (about an inch from ear to ear and a little more at the left temple). Never lose hope ladies and always try to make decisions in your best health!

Comment by KarenGinny - Iowa, US on July 16, 2015 at 5:33pm

My first derm I had tried several rounds of the cortisone shots, and prescribed some shampoo, but after the biopsy showed FFA he told me there wasn't anything else I could do. I felt defeated and never went back to him again. A year later I went to another dermatologist and he at least was willing to try to help me. We tried plaquenil but I got an awful rash from it and now I'm on Methotrexate to try to decrease the inflammation. I know my hairloss is not going to change but hopefully not get any worse. I just try to hide it as best I can.

Comment by Annie on July 16, 2015 at 4:54pm

Little Sad Eyes, I think several of us have had a bad ffa experience with a doctor.   I had to switch from my derm of more than 15 years (a Harvard graduate).  I diagnosed myself from searching the internet & scheduled an appointment.  My doctor never even took a close look at my hairline and said I probably had the beginning of female pattern baldness.  He spent several minutes asking about my family's history of baldness and said that there was very little that could be done.  I refused to let him leave the room without taking a close look at my hairline. He took one look, and literally ran out of the room saying he needed to consult with his associate.  I sat in the examining room for probably 30 minutes before he returned with his associate. They both confirmed what I had figured out on my own, I had early stages of ffa.  After telling me that I should prepare myself for a future of wearing wigs, he prescribed a topical steroid (to help with the itching and pain) and told me to come back in 4 months.  I never went back to him.  Three weeks later I had an appointment with another doctor (not a Harvard graduate) who actually took time to examine my entire head and sat down with me to discuss options.  I hope with all my heart that your case isn't ffa, but that doctor had no right to speak to you like he did.  You deserve a second opinion with a caring doctor.  It's true that ffa is very difficult to treat, but no one should take away your right to hope.  My ffa is still active, but I believe that it would be much, much worse if I hadn't decided to take plaquenil.           

Comment by Lo on July 16, 2015 at 10:38am

Little Sad Eyes - I am shocked that your doctor was so dismissive.  Particularly about the finasteride.  If you have AGA, then finasteride can help with that.  Whether it helps with FFA is still unknown (depending on the study that you read)... but he at minimum should have given some credit to that solution for the AGA.  This can be a distressing diagnosis, and much of that is the unknown - the "what is going to happen"... the "how bad will it get".  As hard as it is to do - look in the mirror every day, and tell yourself that you are beautiful.  It sounds corny, and it isn't easy to say that to yourself... but try it.  You will start to believe it.  You are a beautiful young woman.  I think you would look sexy/beautiful even w/out hair... you have great bone structure and pretty eyes.  Believe me - you have a lot going for you.  Don't let this consume your young life.  I would also switch dermatologists.  Even if there isn't a definitive cure - just anecdotal "evidence" that some medicines may work to slow it down - he could at least have some decent bed-side manner... which, clearly is not happening.  When do you get your biopsy results for the FFA? 

Comment by Anne Louise on July 16, 2015 at 10:18am

I think it is so important to maintain hope. I can't believe a doctor would mock a patient's anguish and laughingly say nothing will work. There are treatment options which may slow the progression. And who knows? In time there may be improved treatments or even a cure!

Last fall I attended a conference for my nursing CEU's that covered diet and inflammation. I decided to start taking fish oil supplements and drink 2-3 cups green tea daily. To me this was a simple change, not challenging like going gluten free (tried that for a couple months). In the meantime I came off Doxy and Plaquenil, due to side effects and they didn't seem to be making much of a difference.

I had a check up with my dermatology a few weeks ago and he showed me a pic of my scalp from last summer...a huge improvement! I have no redness or inflammation right now. I still have hair loss, but it is so slow it is barely noticeable.

I recently decided to search green tea and hair loss and was surprised to see that some anecdotal studies point to success. Now I'm not saying green tea is the wonder cure for FFA, but it is a simple enough thing to add to whatever regimen you may be on. It took me a while to find a brand I like, but I have settled on Bigelow Earl Grey green tea and love it!

Comment by Sad in chicago on July 15, 2015 at 6:07pm

So ladies, my derm also told me nothing could be done.  She suggested all the things that you all keep talking about, but, in fact, she said at the end of the day there is no documentation that any of it worked.  I started off with rogaine and propecia, to no avail.  I decided against anti malaria drugs, etc., because I did not want to take medicine of that calibre for something without secure documentation that it was worth it.  I do nothing now.  It stops and starts, but mostly seems to have stopped for a bit.  The intital damage was so debilitating to me however that I cannot see how anything would "work".  What does work mean?  Will it grow your hair back?  Will it stop the progress?  Does it matter?  Gone is gone.  I am trying to get over it and live with hairpieces and other options.  As I said, some days I look great and others I feel that I am ugly and you can tell my hair is not real in spite of the fact that I have spent a fortune.  And, summer, which I used to love is ruined with heat, persperation, time at the pool (not anymore) working out and walking (hardly any more) and running to put my stupid thing on my head when grandchildren sleep over.  Lack of eyebrows totally a bummer too, although a cosmetitian helped me with that.  

Anyway, I guess the answer is to live with it, take care of yourself and try to get over it as best you can.  Do not fill your bodies with awful drugs.

Comment by LittleSadEyes on July 15, 2015 at 5:27pm

Lo that's exactly what he said. I mentioned FInasteride, he said "Any dermatologist would laugh you out of the building", i mentioned the anti-malarial and doxy and he just laughed and said "nothing will work". What a great guy.

• ‹ Previous
• 1
• …
• 218
• 219
• 220
• 221
• 222
• …
• 507
• Next ›
• Page