Comment

Comment by Catherine on January 12, 2014 at 4:39pm

Rita, I put aloe vera gel on my scalp to relieve the itching and the dryness. It helps a little and I prefer to use it than the steroid lotions (Synalar, Clobetasol etc), which have thinned my skin considerably. But I am not sure the aloe really helps with the inflammation. It just feels soothing in the moment...

Comment by Alice on January 12, 2014 at 4:35pm

Rita, I haven't tried aloe but have found that tea tree oil helps with the itching. I put it on with my fingertips. It smells strong at first but soon disdipates.

I found clobetasol to be very irritating but am doing better with betamethasone. It's weird that some of us have itching and tenderness while others don't. 

Comment by MJ on January 12, 2014 at 4:31pm

I had a typo in my last post. Meant to say only do highlights in the front. I did not realize either that this was not a private group...

Comment by Rita - Canada on January 12, 2014 at 3:10pm

Has anyone tried aloe vera gel to the scalp to lessen inflammation.  The Clobetasol lotion is causing small bumps even though I apply sparingly and scalp is still itchy so don't want to keep reapplying it.

Comment by Liz on January 12, 2014 at 2:58pm

Hi. Is there anyway to make this group private? If I put a search for FFA in to Google I get all our comments and pictures. 

xx

Comment by MJ on January 12, 2014 at 2:11pm

One more thing i forgot to mention in my update, Dr. Bergfeld said it was ok to color my hair, but not to only do highlights in the frontal region since they use foil and don't go near the scalp. MJ

Comment by Jules UK on January 12, 2014 at 12:55pm

I've also just had my top-up appt for eyebrow tattoos and agree with you whole-heartedly, Pauline. I went to Belinda Hayle as recommended by Debs and Celia. It was a 2 hour drive but worth it. She could also do a shadow tattoo to help disguise the hairloss above the ears. But I would only do that if the front hairloss eases, reducing the need for a hairpiece.
Has anyone noticed an increase in sensitivity after the excesses of Xmas? I had had a period where hairloss seemed to have stopped but over the last week my scalp has begun to itch and I'm losing hair again! I wondered whether it's because I've reverted to a poor diet with too much sugar and, let's face it, too much booze! So it's now back to sensible eating to see whether I can reverse the trend.
A belated happy new year everyone. Thanks for all your posts!

Comment by Pauline on January 12, 2014 at 11:58am

MJ, that's sounds like a very positive appointment you had with Dr. Berfeld. It is good when you meet someone who is thorough with you and is prepared to discuss all avenues that are open to you. I found the information about the stem cells particularly inspiring!
I thought I should share with you all the decision that I took before the Christmas break to have my eyebrows tattooed! I went to a local lady (HD Brows in Banchory - Rachel Cordiner) who was absolutely brilliant! I had my follow-up appointment yesterday and I can honestly say that it has been the best thing I have done since my diagnosis of FFA 2 years ago! I no longer have to waste time in the morning trying to create eyebrows (which were totally wrong looking anyhow) and I find I am not dwelling so much on the hair loss. I am now thinking about having permanent eyeliner done to lessen the time again I waste each day in my quest to make the most of my make-up regime to try and detract from my hair!
I am going to my GP shortly to ask to be referred to Dr Susan Holmes in Glasgow (recommended by Dr Christos) to see if she can make any further recommendations to me as I am feeling quite alienated here and don't feel that the treatment I have had to date is as thorough as it could be. I'll let you know how it goes but in the meantime, would like to think you all for sharing your experiences; it is reassuring to know that I am not alone! Pauline

Comment by MJ on January 12, 2014 at 10:11am

Hi everyone, I had my appt with Dr.Berfeld at the Cleveland Clinic on Friday. I was very pleased with the experience. She spent a lot of time with me and was very thorough. She changed up my treatment plan and took more blood samples to look at more hormones and thyroid counts. She is also going to review the actual slide from my biopsy rather than rely on the report. Photos were taken as well. So, i am changing to a liquid clobetasol once a day for 5 days on and 2 days off. Also, 5 percent rogaine on top of that and on eyebrows. Also, I am to shampoo with Nizerol 3 times a week. Lastly, I need to start on Vitaline Forte 3mg with zinc. I had to order that in line. She also advised me to take the full 400 mg of hydroxy regardless of my weight. She said the idea of treatment is to preserve as much hair as possible until loss stops. After two years, transplants are possible for patients if needed or desired. If done prematurely, it could reactivate and over the entire head. She also commented that perhaps within a couple years they will be injecting stem cells and growing new follicles. My husband perked up at that news for himself! She also mentioned the possiblity of treating with anti androgens, but would want to consult with my oncologist since i have the breast cancer history. For anyone in the U.S. Close enough to Cleveland, Ohio, I would highly recommend Dr. bergfeld. It was worth the harrowing 4 hour drive in a snowstorm the night before the appt. The Dr. will be calling me once she has reviewed my labs. MJ

Comment by Annie on January 10, 2014 at 11:45am

Hi all, Just got back from my 3 month derm appt.  I was very disappointed because while I was with the doctor, the building was evacuated due to a power outage.  I never got to talk to him about using Zyrtec.  I've been using Plaquenil for 6 months and a .05%  Betamethasone topical steroid for 3 months since my scalp was extremely sensitive to Clobetesol.  The doctor very pleased that the redness & inflammation has lessened considerably.  He didn't seem concerned when I told him that the shedding is about the same (At least it hasn't gotten worse!).  He said it sometimes takes 6-9 months for the Plaquenil to affect hair loss.  He is also prescribing Amoxicillan to treat the acne breakouts I've been getting along my hairline (possibly from using the topical).  He suggested I come back in 6 months, but I requested a 3-month apt to discuss other options if the hair loss continues. 

By the way, I've noticed that the a lot of the hairs that have fallen out over the last month or so are different.  I'm seeing lots of little fine wispy hairs between 1 & 2 inches in length.  Has anyone else experienced this?  I wonder if I'm sheddiing some of the new growth from using Rogaine. 

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