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Comment by AnnieMay on May 2, 2018 at 11:55pm

BubbaLu- I SOOOOOO understand. . .

Comment by BubbaLu on May 2, 2018 at 11:42pm

I am on a trip with my husband to visit friends at St Simon’s GA, because of my FFA this is the first time I remember feeling so unattractive.   I don’t even think anyone else noticed, but the psychological effect of this condition is dominating my psyche.  

Comment by Plf on May 2, 2018 at 8:26pm

Hi sad in Chicago andPB sunshine 1, take care and thinking of you both...just when you think you have it sorted..the whole horrid thing fills all your thought process es, .feeling your pain

Comment by PBsunshine1 on May 2, 2018 at 8:11pm

Today I am feeling everything you are going thru you are not alone :( I hope we both have better days ahead. Hugs

Comment by Sad in chicago on May 2, 2018 at 5:57pm

All -- I have not written for a while as nothing has really changed for me other than a continuation of the loss.  It is finally warming up in the midwest and once again the thought of summer and all the hassle and changes and how do I deal with my "hair" is frustrating, as summer was always my favorite of the seasons.  I have graduated from larger and larger hair pieces all taped in the front to trying a light weight wig which should not need tape.  Hoping that helps with the hassle of everything, the itching and irritation, and speed of preparation while getting dressed.  Will advise on that.  Also learned from my hair specialist what my derm needs to do to hopefully get our insurance to help in payment for some of this.  Will advise.  I learned it has to do with how the prescription for a cranial prosthetis is coded.  All in all this continues to be a mess, nothing you can ever be prepared for, a total change in lifestyle and approach to aging and finally just sucks!  No medicine, no cure, no way of moving beyond as continually reminded day after day.  

I will let you know how the wig goes.  I have been a proponent of the topper pieces which have worked for me for the last four years (buying a new one each year as the condition progresses).  Let's see what's next.

Comment by Afraid on May 2, 2018 at 4:14pm

Thanks curlyk for offering to take a list of questions to the conference.  I think most queries have been raised by others but I would reiterate concerns re psychological impact of the condition.  I would be interested in whether someone would be able to analyse the main themes that have emerged from our posts...I think we provide valuable information and we ask pertinent questions.  I don’t think we are listened too on an individual basis.   I would also be interested in knowing a timeline...whilst I appreciate our individual responses differ surely they can provide some information drawn from their clinical work and give some examples of timelines of progression??  They must surely be able to provide us with more relevant data. 

Many thanks 

Comment by ststowers on May 2, 2018 at 9:29am

Hi all, I have been suffering with FFA for around five years (finally confirmed by biopsy in 2017). I was given Hydroxychloroquine 200mg together with Synalar gel in 2016, also painful steroid injections, of course none of this worked!  I was told to increase the dosage of the Hydroxychloroquine to two daily in November 2017 within a week I was suffering from high blood pressure (not shown as a side effect??) and became increasing breathless. I was eventually told to stop taking them, they really hadn't helped and one of the side effects is in fact hair LOSS! So back to the drawing board. Now I am taking Doxycycline 100mg daily for six months together with Elocon scalp lotion. Of course no signs of any change as yet. 

The lotion seems to make the area slightly sore, does anyone else have this side effect? it smells awful and does not seems soothing in any way unlike when I was using the Synalar gel.

My hair loss has definitely got worse over the past year and as everyone on here knows its quite depressing not knowing where it will all end!

Comment by Minter on May 2, 2018 at 8:59am

@ AnnieMay, yes another good question- the psychological effect of FFA and how some or maybe a lot of us are just dismissed by the doctors as middle-aged women with menopausal or just "old aging" hairloss :-(  

@Halfbakedwho, you are so funny! Now I need to find a tall man with a long beard  .... maybe search out the ZZ Top ;-D

Comment by AnnieMay on May 1, 2018 at 10:34pm

No idea what I would do if I didn't have all of you. Having a very down day so I'm hoping that there might be some discussion on not just the medical side of this but the psychological effect this has on all of us as well. . .

Comment by CurlyK on May 1, 2018 at 9:19pm

Oh these are such great questions! I promise I will do my best to bring back good information. Thank you Halfbakedwho for making me laugh... oh how I needed that! As I got caught up reading everyone’s posts, laughter turned to watery eyes as I’m once again reminded how cruel this disease is and how few answers we all really have. Hugs to everyone tonight. 

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