Comment

Comment by Maddy, California, U.S. on June 20, 2013 at 6:48pm

Hi Pam, I don't have any itching and burning. I never have...I don't know why. The Clobetasol is just to try to get the inflammation down. She said Plaquenil is a possible second treatment option, but the Doxy was her first for me...again, not sure why. She did mention a couple of other drugs, including some really strong form of Propecia-like drug...but the FDA has not approved it for women or this particular condition...yet. I was not sure about the name of it. She did mention a couple of other possibilities to try if this course doesn't work....but, again, I didn't get all of the names of the drugs. She did not mention "Actos" by brand name that I recall.

Comment by PamW San Diego, CA, USA on June 20, 2013 at 6:30pm

Hi. Maddy. I am so glad things went well for you. I would like to attend one of her support groups in the future. Did she suggest Plaquenil and did she have any thoughts on the itching and burning other than clobetasol? Also, did she discuss Actos? Thanks. I know you said you want to think about other things, so I will understand if you don't respond right away.

Comment by Maddy, California, U.S. on June 20, 2013 at 5:58pm

Well, I am back from my appointment with Dr. Goh in Santa Monica and wanted to give everyone an update. First, let me just say that my experience with Dr. Goh was very good. While my diagnosis hasn't changed, she is definitely taking a more aggressive approach to treatment compared to Dr. Strict. She did a round of steroid shots all around my scalp, told me to use the Clobetasol twice a day and put me on Doxycycline (100 mg. twice a day). She sat with me and answered all of my questions, and since she has alopecia herself, can relate to the whole emotional side of this equation. I go back in 8 weeks for another round of shots and to assess the effects of treatment.

I also spoke with her about the possibility of hair transplants with this type of alopecia, and she told me that it was definitely possible. She currently has two patients, both of whom she treated for a couple of years, was able to halt the progression, and who have had hair transplants. The first one, who had her transplants about 6 years ago, had all her hair grow back in but then did have a little "flare-up" about five years later and lost some it, but it is still much better than when she first came in. The second one had it done about 5 years ago, and so far, so good...but, of course, you never know what is to come. Anyway, that at least gave me a little hope that it is a possibility somewhere down the line.

Anyway, it has been a long and emotional day and I am now at work trying to forget about it for awhile. I so appreciate this group and being able to come here and have people who can relate and understand what I am going through. Thank you for all of your encouragement too!

Comment by Judy on June 19, 2013 at 6:00pm

I am taking 2X400 tumeric.
Someone mentioned last month that she used Tryimeiclone on her
eyebrows and had good luck with them growing back, even though
they were a lighter color. Has anyone else tried Tryimeicione?
I have a prescription for it and am curious who else has tried it.
Thanks, Judy from San Diego

Comment by Rita - Canada on June 19, 2013 at 2:24pm

Celia & Debs- I have been taking 1 x 400mg of Tumeric per day, what strength are you using? It does say to take 3 @ day and I'm considering upping my daily amount. One can only hope it helps with the inflammation as it claims.

Comment by Debs on June 19, 2013 at 2:12pm

Celia, good luck next week with Dr Harries. I am pleased I am taking the turmeric supplements. I can't tell if they are helping my hair loss but they are very good anti-oxidants so taking turmeric is good for my general well being. I am very pleased that you are able to use the dermovate less. XXXXX

Comment by Celia on June 19, 2013 at 8:54am

Debs - I agree. I had an interesting chat with my GP the other day. We both felt though that there may not be just one trigger, that individuals are possibly just prone to having the immune system under attack. I do think that pesticides/household cleaning products/time of life/stress and so on are all factors here. Isolating a single cause I reckon may never happen. Treating the symptoms is all we sufferers now can hope for.
I think that the ideas that have been put forward in recent days, like PMA, exercise, diet and so on may really be the key rather than oral meds. I must say that since taking turmeric - I haven't needed to use dermovate/clobetasol in the mornings, just at night - just in case !!I am seeing Dr H next Thursday - not a trip I look forward to ! Heidi - what you said about FFA and the attitude of friends to this - is totally right in my view - but I can't bring myself to tell anyone yet. Your hair when I saw you looked amazing. I'm going to try the L'Oreal Everstrong shampoo and conditioner - I will get it from Amazon and one of you said it's sulphate free - got to be a good one ! XX

Comment by Debs on June 19, 2013 at 5:41am

Jules, I think the research needs to be in finding out the cause of FFA - once they know the cause we can avoid that and the medical professionals can find a cure. I think the cause is something environmental because FFA did not happen historically so there is something in late 20thC and early 21stC living that is affecting us. Insecticides, hormones fed to cows to increase milk yield, sulphates in shampoos have all been mentioned by medics as possible triggers but I think the research needs to really nail the root cause first. XXX

Comment by Heidi Short UK on June 18, 2013 at 6:19pm

but your friends and family are the most important to you and they are still there for you.Just think if you had a friend who had ffa would your feelings change for them just because they have less hair! x

Comment by Heidi Short UK on June 18, 2013 at 6:13pm

Christie I agree with you, I do keep busy so I'm not dwelling on my hair, I also excercise quite a bit, for 2 reasons really, I'm a cook and I love food so I eat too much,and since I started the menopause 6 years ago it made me feel better so I go at least 3 times a week. I also try not to get too stressed, so I arrange my life quite methodically, which annoys my husband as I'm not good at spontanous, but it keeps me on a level path!
I know I am feeling alot calmer now dealing with my hair loss than i was last year but we have all been through that panic stage of the unknown, how soon will it go, how far back is it going to recede, what am I going to look like, the list is endless. But I found, once I realised it wasn't all going to go quickly, I'm taking everything I can to slow the process and after 18months you still really can't tell I've got a problem, except on windy days,then slowly your life gets back to normaland its not the first thing you think of when you wake up! So hang in there I know its not great but

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