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Comment by Airam-FFA on November 5, 2017 at 3:33am

Hi illustr8r

Wouldn’t it be amazing if they could find a trigger to halt the FFA. Something is triggering it in the the first place so why not something to trigger burn-out.

That is all I want.

xOx

Comment by Airam-FFA on November 5, 2017 at 3:28am

Hi Jules Australia

We understand your need to vent. It does get rid of some of the frustration that goes with this crappy condition, so don’t apologise for venting.

I am eagerly awaiting the publication of the results of the research that was carried out earlier this year. They have ‘interesting’ findings and I am very keen to learn what it is. I hope they will publish the findings very soon.

xOx

Comment by illustr8r on November 5, 2017 at 3:20am

for whatever reason I’m having a flare-change of seasons/hormones/food it’s really disheartening. Lotsa hair in the sink and wispy hairs that have been blow dried into my husband’s sink too! I can clearly see where the hair is disappearing from and even my “good” hair is shedding. I was doing so well just 2 weeks ago but something has triggered it again. Instead of shopping for shoes on Zappos I’m bookmarking wigs online that I like on different wig sites. Never in my life did I think I would be needing to do this but here I am. I have to adapt, take a deep breath and move on-that’s my realization for today. It makes me really sad this stupid disease. I hope someday they figure out why it’s happened to us. Arg!!!!

Comment by Jules Australia on November 5, 2017 at 2:48am

I never went back but my symptons continued and eventually I went to another derm ( around 7mths later ); he couldn't see anything on my scalp to give any clues, but then again he didn't use any highly magnified tools to look at it either. . . . I then asked, could my pain be coming from under the scalp surface as in cicatricial alopecia & he said only way to know for sure was via biopsy. . . . & thats when I got results of lpp/ffa. ...has been a long emotional roller coaster since then. ....try my best to get on with it, so to speak, but I do understand just how hard this is; would be  great to just get on with living life, however  the symptons of this disease really can, often, make that a very difficult thing to do!! I apologise for the long posts, but sometimes it feels good to vent espec to those who truly get how this can be such a struggle...thx for listening

Comment by Jules Australia on November 5, 2017 at 2:36am

Agneta, I can understand the emotional distress you have experienced with symptons of this condition, as have many others.I don't know that I am braver than anyone else going through this; I also found myself in a pretty distressed state, especially in the beginning with sudden onset (late 2012) of the od scalp sensations, extreme tenderness, pain & hair growing out weirdly, soon followed by hairloss from sides & front. I knew something sinister was going on & was visiting my GP within a few days from when it started as it just was so unusual & quite frightening. I soon became quite depressed and also had to start on anti-depressants. My GP is a lovely woman ( same age as myself 59..i was 54 back then ), but she just had no idea what it was. . .she made diagnosis of possibe psoriasis, but soon realised it wasn't that. Next step was referral to a dermatologist ( female ) who looked at my scalp once only ( 3 visits over a 6 week period ) & she diag me with Seborrhic derm. I soon realised from the description of visual symptons of SD, that it seemed pretty unlikely it was that ( I think the derm made her diag by my scalp pain/sensory description alone ). . . . she persisted thatSD was what I had, told me to keep using ' head&shoulders ' shampoo & any conditioner. . . I did so much research trying to figure out what this could be; came across symptons of lichenplanopilaris & FFA & felt this sounded spot on to my own. . . but when I suggested to the derm that I thought I might have ffa / lpp, she simply said " oh, no, I have had patients with that, you don't have that ". . . then she pulled back hair from her own forehead saying " we all have some hairloss at this age, it's called the xmas tree effect. I also wanted her to examine some hairshaft samples ( as I mentioned previously ) that I had diffusely over my scalp many odd dystrophic looking twisted kinked shafts ( that had irregular sections of kinks / bumps along shaft & felt very course)...i felt all this must be connected, but she refused to look at them, simply saying " oh, we've all got a few funny hairshafts. ...she just would not even consider my suspicion that this could possibly be what I had. ....kept sending me away advising me to use h & s shampoo & cetaphil lotion on scalp in areas that felt dry & raw,  was all so demoralising. ..obviously I soon realised wasn't going to get any valid answers from her. ...just felt so alone & depressed. 

Comment by CurlyK on November 4, 2017 at 9:51pm

Illustr8r, I know what you mean about being tired of fighting. I too was exhausted by trying all sorts of remedies and trying to cover my hair loss. I felt like I got ‘me’ back once I got my hair piece and stopped being self conscious on a moment by moment basis. Choosing to get hair is a difficult decision. It’s also difficult at first to start wearing it. Now it’s my new norm and I’m very happy I made this choice. I’m sending positive thoughts and prayers your way as you start exploring other options.

Comment by illustr8r on November 4, 2017 at 8:33pm

I talked with my hubby last night and he thinks it’s a good idea for me to explore wigs. I’m just not able to take extra drugs ( that may or may not work) because of my kidneys. I had a dr. appointment on Thursday and my dr was sad to see the amount of hair loss I’ve had since I last saw her in March. The handwriting is on the wall I think. Time to embrace the new me I think. I’m tired of fighting and the daily wishful thinking.

Comment by pauliegirl on November 4, 2017 at 4:59pm

AnnieMae, definitely scary stuff to see! My derm has been prescribing it for over 30 years and didn’t have this concern.He reviewed multiple rare side effects besides the dryness but hair loss was not one of them. As well, the research study had such solid results. Now granted they didn’t state they didn’t have subjects with loss, I suppose I need to try to verify that.
I will keep you all posted on my results! I will also pose these questions directly to my derm and let you know of his experiences. Thank you for your important info!

Comment by AnnieMay on November 4, 2017 at 4:21pm

Thank you reminding us pauliegirl! I just re read the study again and it is encouraging. I will bring it in to my appt. But then I look up the side effects and read this? 

Isotretinoin and Hair Loss

One major side effect of isotretinoin is that it dries tissues, causing dry skin, cracked lips, dry mucous membranes, and dry scalp.

It may thin hair or cause it to become dry, brittle, and fragile.

This happens because isotretinoin slows down or blocks the production and secretion of the body's on own natural oils.

According to anecdotal reports, isotretinoin may not only thin hair on the head but also on the face, causing a loss of eyelashes and eyebrows.

Some people may become bald.

Although hair may regrow a few months after stopping isotretinoin, some people report that it took several years.

Others say isotretinoin caused permanent hair loss.

Comment by pauliegirl on November 4, 2017 at 2:45pm

Hi Guys, not to be redundant or pushy, but just checking to be sure you saw the post from Jess last weekend citing the research with accutane. 70%+ had success in halting progression of hair loss. This is huge. I went to my derm yesterday and he is as excited as I am. I am now taking the accutane, 20mg per day. I understand many of you are concerned with taking meds and I respect wveryine’s decisions. Accutane is basically a large dose of Vitamin A. Certainly it can be very drying. I will be taking extra measures to prevent the dryness. Anyways...just wanted to re-pass this on, as in the nearly 2 years I have had this and done tons of research I have never ever seen success numbers as with this! Thanks again, Jess.

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