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Comment by Minter on September 6, 2016 at 11:02am

Hope everyone in the USA had a nice 3 day weekend!

Had my follow up derm. visit this morning-  she is pleased with my hairline, says it doesn't look as pronounced as before and there is no additional loss since a month ago.  She gave me steroid injections along my hairline and for the first time, at my eyebrows, ouch!  She is reducing the Clobesterol to 2 x's per week and I will start Plaquenil tomorrow at a low dose for the first month to see how I react with it.  

This is because after taking the Minocyline for only one week, I felt like I was losing my mind with the side effects! Dizziness, joint pain, my brain felt scattered all over the place, it was to the point where I was afraid to drive, I felt that bizarre and weird from the medication.  Scary how something that is supposed to help you can make you feel that way.  

Anyway, I am back again in a month for the follow up.  Up until the appointment, I was getting the point where I was just going to give up all the medications and whatever happens with my hair, happens- but when I was sitting there in the office, I was like, oh wait a minute, I am here, I want to do whatever I can to save what hair I have left, give me the injections, pills, whatever you think will work! But at the same time, I don't want to be on long term medications for this, I have read some of the side effects for plaquenil & clobesterol, not very pleased with what may happen, long term.  But I guess for now, it is all I can do to hopefully halt the hair loss. 

Comment by Minter on September 1, 2016 at 11:41am

Oh BU, you are a stronger woman then I, because no, no, no way would I not color my hair!  If I lose more hair because of coloring it, then so be it, I don't want to be gray on top of all of this too :-( I also still use sunblock, I try and use only zinc oxide at least on my face/hairline, but sometimes I have to use regular sunblock, but I look at it as, either lose some hair or risk skin cancer- so I will keep using sunblock :-/

Comment by Minter on September 1, 2016 at 8:59am

No, I don't belong to CARF, maybe I should look into joining though.....

I got my hair cut and colored yesterday for the first time since my diagnosis- I was telling my stylist about FFA, the symptoms and all that is involved. She said she didn't notice any thinning or anything going on with the rest of my scalp, which is good, but she said she had noticed the hair loss in the front the last time I was here.  She also said she has another client who has the same symptoms. 

Actually , now that I know what it is that I have, the first thing I look at when I see women around my age or older is their forearms, if the arm is bare of hair then I look at the hairline.  Not that it makes me feel better to see someone else with "more then likely it is FFA" but seeing other women like me going about their day makes me feel stronger & more confident about this- if any of that made sense :-/

Comment by Mel on August 31, 2016 at 12:42pm

My derm told me it's a permanent hair loss, yes, but a moment later her assistant explained to me that one patient who lost 5 inches to FFA had 1 inch of regrowth with the shots, but apparently no more. I probably have lost an inch, tops, at this time, but I mentioned in here before that I had two patches of regrowth, growing FORWARD, toward my forehead at the hairline after 5 months of eating 100% autoimmune paleo diet and only organic, including organic meat, plus taking biotin, Vitamin D. Those hairs are a little enflamed at times at the root now, with the slick hair and bulging vein at their worst (when the condition appears to be active) but I'm working to get back to 100% AIP to (if that's what did it) calm it down. But the hairs are hanging on and long and blended in now.
I mention this to say that yes, I think regrowth is possible... Though perhaps there's a short window of opportunity?? No idea if there's a clock ticking for this possible "success." Or if my little hairs were a fluke.

Comment by Minter on August 31, 2016 at 8:09am

That may very well be the case, that there are different variations of this- I mean there are so very many different symptoms that some of us have and some of us don't, it makes sense to me what DeniseC says :-)

Comment by DeniseC on August 31, 2016 at 3:32am

If your derm says there is hair regrowth, surely there must be - so no la-la land!  I just wonder whether we all have the same condition. Maybe we do, but maybe we don't. When I was diagnosed, I was told it was a newish condition and that many medic have never heard of it, hence my doctor's diagnosis of hair loss being down to age (thanks). So is it a possibility that there are different conditions that are similar? Who the heck knows.

One thing for sure, I am going to raise this now - will post with the outcome.

Just keep on nurturing those lovely baby hairs!!.

Comment by Minter on August 30, 2016 at 8:04pm

BU, I am glad to hear the AWESOME news from your follow up visit!  I will mention your meds to my derm when I go-  I am already taking Vit. D, Fish Oil and Biotin, actually I was/have been taking all of this before I realized I was losing my hair :-/   

Mike's Deb & KarenGinny,  I love both of your posts, you guys are so strong and I do admire you both! 

Comment by DeniseC on August 30, 2016 at 4:18pm

Ditto from me - I have been told that as the hair follicles are killed off, they cannot regenerate. I don't have scarring, or itching, just hair disappearing (apparently into the ether!), so not sure if it's the same thing even. Who knows?

But - WOW!!  Great news. Am highly delighted for you.

x

Comment by Sad in chicago on August 30, 2016 at 4:00pm

Awesome.....very surprised, but happy for you, as I have been told over and over, no cure for FFA, and I have given up on the medical side of things as I felt too many of those options were not for me.  Keep us posted and good luck!

Comment by KarenGinny - Iowa, US on August 30, 2016 at 3:51pm

I love you comment Mike's Deb!  I've always had thick wavy hair and always thought it was one of my better features, so the idea of loosing it was really hard on me. I've been dealing with this for at least 4 years now, and think I've come to terms with it for the most part. I still hate it, but I can hide it somewhat, and no one has really asked me about it.  My husband and kids aren't bothered by it and I don't try to hide it at home. I try to make myself look my best when I go out but I've tried to have the attitude that if people want to stare at my weird looking hair, there's nothing I can do about it. I have a 16 yr old son who has autism and my other 14 yr old son. I need to take care of their needs and I can't let my hair situation keep me from doing things with them and enjoying my life.  I'm still self concious about my hair sometimes, but try not to dwell on it. Like they say, YOLO!  You only live once!     Also that is great news for those who have found re-growth!

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