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Comment by April on September 4, 2013 at 1:43pm

Hey everyone! I have been pretty crazy lately so I have not been on here, trying to catch up with everyone's comments. I just wanted to update everyone as to what is going on with me. I saw my doctor today. About a month ago I completed my 10th treatment with the xtrac laser and received one rou d of kenalog Injections. We aren't really sure whether either of these are helping or not. I am still, slowly losing hair at the hairline. But we are not sure if it would have been worse without the treatment. Ugh, pretty frustrating. Anyhow, I didn't want to continue with the injections because I did develop some atrophy of the skin where they injected me. Nothing horrible, but you can feel a depressed area on my head. My doctor said that eventually resolves itself. Anyhow, now he wants me to try clobetasol and rogaine. I may go back on the extrac if it turns out it was helping. Not thrilled about trying these drugs. But, I know some if you have tried these. Anyone have success with these things. I'm worried it could make things worse? So frustrated here! My doctor is confusing and I'm worried maybe I should still be on the xtrac treatments? Ugh! Sorry I'm not being more positive. On another note, I am also going to see a rheumatologist for the widespread body aches and pains, fatigue etc. I have been dealing with this for about 6 years so also trying to get to the bottom of it. I had to abandon my paleo diet because it was actually making my symptoms worse, not sure why. I am still eating healthy but have had to add grains and potatoes back in. I was having trouble digesting all of the protein I was eating I think, anyhow, sorry for the long post. Hope everyone is well, I am learning a lot from your comments. Thanks!

Comment by Debs on August 30, 2013 at 2:24am

Carol well done for educating your doctors... I am horrified how in the UK patients with alopecia are not given any advice on support groups or wig info with a diagnosis. We are just told bluntly with are losing our hair and that's it... I have given my GP info on this website and several others but I very much doubt he will pass it on to other GPs in the practice or any patients.

I started wearing wigs when it got to the point that a wig looks better than my own hair... I get compliments on my hair all the time in my wigs, several times a day, it is unbelieveable. A complete stranger walked up to me a few days ago and told me how lovely my hair was! It is hilarious really. I was working with a girl last week that was wearing a wig. I worked with her a couple of years ago, so before I was diagnosed with FFA and had no idea she wore 'hair', now of course as a fellow wig-wearer I can tell because I am tuned into peoples hair whereas in the past I was oblivious. Her wig is very natural looking and nobody else would every know. I would love to know the brand she uses. I would not of course ask her because it is such a sensitive subject for most of us and I don't want to 'out' her so to speak even in private just between the 2 of us.

But the moral of the story is that for those of use that wear wigs - other people really can't tell it isn't our own hair because they are not looking at other people that closely and they just don't have wigs on there radar.

My anti-inflammatory diet (see Dr Weil's website) is going fantastically. I have lost a dress size, an unexpected bonus. My skin looks really fresh. I feel that it is improving my overall health and it is giving me peace of mind that I am trying to help myself. I am going to keep on it. I am also juiciing vegetables at least once a day to improve my nutrition further.

Have a great day everyone. XXXX

Comment by Annie on August 29, 2013 at 12:54pm

Hi everyone. It's a hot, humid day in Missouri today, and my normally straight hair is a frizzy mess. I was trying to tame the flyaways this morning when I noticed a bunch little short hairs sticking straight out. I started using Rogaine April 5, and the new hairs are about 2 inches long now. For once I'm thankful for a frizzy hair day to help me see that I'm making a little progress up there. I'm reminded that with FFA I need to rejoice in even the smallest blessings.

Comment by Annie on August 29, 2013 at 12:42pm

Comment by Jules UK on August 28, 2013 at 12:57pm

Annie, thanks for your advice on using Regaine. I'd been despairing of seeing any improvement; in fact the thinning on my temples is now such that I was about to ask hubby to start noticing how visible it was out in the big wide world and whether it was time to consider a wig. But last night I noticed some stubby, spiky hairs. Not fine, fluffy ones as some of you have described. But I'm hoping they're new ones! Should coincide with Plaquenil kicking in... Feeling hopeful for a slowdown at the moment. Oh, the ups and downs with this FFA. Xx

Comment by Annie on August 28, 2013 at 10:16am

PamW, thanks for the information. I did some research on Plaquenil yesterday, and it sounds like the results are slow and so gradual that you barely notice it. Now that I think about it, my face doesn't itch anymore, and I rarely have the crawly feelings on my scalp these days. At least that's an improvement. I can only use Clobetesol three times a week at most because it makes my scalp unbearably tender. An ice pack helps on those days.

Comment by PamW San Diego, CA, USA on August 27, 2013 at 7:36pm

My experience with Plaquenil is that I really noticed less itching at about 9 months to a year. I just passed my one year anniversary and the itching and burning have definitely improved. My dermatologist said that I had redness around the nape of my neck and behind my ears because I used clobetasol too often and for too long. She only wants me to use it every other day and not on weekends. She said you need time off from it or it can harm your skin.

If I am really itchy and can't use the clobetasol, I will use Paul Mitchell's tea tree oil and conditioner which helps. It is very drying, so don't use it too often.

Wishing you all well.

Comment by Brenda, IL US on August 27, 2013 at 4:20pm

Annie, the first dermatologist i saw last year put me on Clobex first and i developed a red rash where i had applied it. Then she prescribed Luxig and the rash worsened. The first time i visited her she thought i had FFA then she changed her mind. She recommended Free and Clear shampoo and conditioner and womens rogaine once a day. I returned in six weeks and she was sure my hair was coming back. She thought the hair loss had been due to lupus. Then i stopped the rogaine in january and my hair has fallen out horribly. The derm. that i saw this summer said i have FFA. I started the plaquenil for my lupus in Dec. 2011, i think, and at first i thought it was causing my hair to come out as that can be a side affect. Don't know who or what to believe. I just want the itching to stop and my hair to sop falling out. :)

Comment by Annie on August 27, 2013 at 2:02pm

Brenda, sometimes we just need need to vent. It's not like we can compare symptoms with the neighbor across the street from us. I'm trying so hard to be hopeful. I honestly feel like a positive attitude helps the healing process. I never had any symptoms except hair loss until after my diagnosis in March--no pain, redness, itching, or red bumps. I thought my receding hairline was just part of the menopause process. Since my diagnosis the scalp around my face has gotten itchy and so painful that I can barely stand to go outside on a windy day. I wonder if it's the alcohol in the Rogaine and Clobetesol causing the discomfort, but I'm scared to death to stop using them. My doctor seems puzzled since my scalp always looks fine

Comment by Brenda, IL US on August 27, 2013 at 1:13pm

Annie I'm having a rough day too. I've been on plaquenil for almost two years. Something was working last fall. Don't know if it was rogaine or plaquenil. This spring and summer i've had more hair loss than ever. I had red blotchy places on the sides and those are gone. Never experienced itching at top hairline (that i can remember) til this summer. I shouldn't have stopped the rogaine in January. I'm done griping. Sorry I'm no help.

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