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Comment by Halfbakedwho on November 4, 2018 at 3:07pm

Interesting about the spongy scalp - me too, only in the front. At about age 45, it seemed like my hair texture changed and I too did the keratin treatments, which I have been warned off of now. 

In the beginning, when I first noticed this back in 2015, it was only the sides that were noticeable at all. I thought maybe I didn't have FFA b/c the top was okay looking. Fast forward...winter-spring 2016 I "noticed" without noticing - a lot of thinning. But I was in denial and just would forget about it. 

Now I am not particularly worried anymore... just kind of waiting and watching... thinking again about the cost and the comfort. I am relieved there's a cosmetic solution, so I'm no longer worried. The cost will just be a pain in the a**. The comfort - I'll have to get used to it - there's no air-conditioning here so I am concerned about the summer. The hair lady told me that that could be difficult - sweat and glue under the fake hair - ooky. OK so maybe I AM worried - lol. 

I wonder about the hair powder warning - I may try some anyway since it seems to me that NOTHING I do or don't do makes a whit of difference  : /...  

Still just leaving the Finasteride in the box, but taking all the other things including the low-dose antibiotic. 

Bonne nuit.

Comment by Afraid on November 4, 2018 at 3:11am

Hi All

Annie May, my hair now exactly as you describe...  I do think menopause must be in the mix somewhere.  That’s what I’d initially thought prior to diagnosis.  

Halfbakedwho, my scalp exactly same as you describe.  I’ve only got the spongy bit on front scalp area and I wondered whether that was visible inflammation?  Quite dramatic hair loss at sides  and that’s not spongy but the skin texture looks strange.

Prior to knowing I had this condition I noticed I could no longer ‘do’ anything with my hair so I tried a keratin hair relaxer treatment then went on holiday in the sun!  I’d hoped it was all a reaction to that (which if I’d known I’d never have done).  The loss and change in my hair has been so dramatic over past year... 

liz and curlyk look amazing with their ‘new hair’ and that is keeping me going.  Finding somewhere in Uk to have this done ‘professionally’ seems tricky.  It seems like big business.  As HBW said it’s not some ‘narcissistic...experiment’  I don’t want to have ‘celebrity’ style hair achieved by adding extensions.  I just want my own hair not to leave my head. 

Effects of medication - hydroxychloroquine 1 or 2x daily for past year  , it seemed to dull my appetite and I lost weight (or was that the shock of diagnosis and fear of future?) and had rash on chin until I reduced to 1x daily, I also had dermatitis around nose for couple of week, but no other noticeable effects.  I’m on 5th week of doxycycline and whilst my skin feels better I noticed some weight gain and it seems to negate effect of my low dosage hrt which I’ve taken for past year.  Sleep is so disrupted I don’t know how I function some days.  The doxycycline does make me feel nauseous until I’ve eaten.  Overall medication has not stopped or slowed hair loss or shedding but perhaps reduced burning and stinging which from psychological perspective does mean I can have some moments when it’s not at forefront of my mind!!!  Can I just add until this condition popped along I was reluctant to take a paracetamol!! 

Did anyone notice any stabilising after first year?  It would seem reading all threads it sometimes has periods of calm before it flares again? 

Thank heavens for you lovely ladies.  I do wonder whether there is a subsection of this group managing this on there own and without the finances to consider hair replacement and wonder how on earth they are coping? This is yet another reason we should campaign for more awareness, research and some contribution towards ‘new hair’.... the psychological effect on our health and wellbeing from this condition is huge.   KarenD - you are absolutely right about ‘worry’ and not seeing this coming!!! I try so hard not worry about what else may be lurking round the corner and to enjoy the moment.  Good luck everyone x

Comment by AnnieMay on November 3, 2018 at 11:57pm

To all- since all this began the texture of my hair has completely changed from healthy and thick to thin, dry and straw like? This has probably been a subject before but I don't understand why this is happening? maybe it's more about menopause and changes in hormones I don't know?? 

Comment by Tessa on November 2, 2018 at 9:35pm

Just my comments about questions people have asked on medication:

 have been using FInasteride for a year or so with no problems. However, I'm not convinced it's really doing any good either. The intention is to make the rest of my hair a bit thicker, as I have always had very thin, straight hair.  It may be helping in that way a bit, but hard to tell. It will not stop FFA fallout.

I've also been on hydroxychloroquine for over 4 years with no issues. You need regular eye checks and need to keep out of the sun (rather tricky here in Australia) Dermatologist is taking me off it now, as it does not appear to be doing any good anymore. It did seem to at first. I've never really had much itching or redness, just hair fall out, so maybe this has been keeping that suppressed. I shall see what changes when I stop taking it.

Comment by Mary on November 2, 2018 at 5:14pm

My dermatologist told me at one point that this will eventually burn out, anywhere from 5-10 years. Once it is done, it does not come back. Anyone else heard this?

I was diagnosed in 2013, but my hairline began receeding in 2011.

I was on steriods for several years, but that did not slow down the hair loss, so I stopped the medication. I have been to specialists, who recommend woman's rogaine, but I have not seen any improvement. 

Halfbakedwho, yes, my scalp where there is no hair is shiny, and feels "thinner" and a bit more sensitive than the rest of the scalp.

I appreciate reading about your struggles and your spirit!

Comment by KarenD on November 2, 2018 at 4:57pm

I have United and it doesn't cover hair. I agree with the concern over continued costs.  I am not quite to the wearing hair stage yet but will be soon enough. When I think about how much it will cost over time it is a bit daunting to think we would pay so much over our life span for something that should just be naturally on our heads!  Frustrating for sure.  One thing I am trying to learn from this is it doesn't pay to worry about what will come your way as I sure never saw this coming!  Ugh!

Comment by Halfbakedwho on November 2, 2018 at 1:20pm

I agree, here in France, it's the same. No cancer, no hair cover. Yet, we have an illness, this isn't for narcissistic gratification, "fun with hairpieces" experiment. I worry about the future cost, and how I will tolerate my hair when it's hot out. Not there today, but didn't (again) take the Finasteride this morning. 

Do any of you find that your scalp is just sort of strange where you've lost or are losing hair? It looks shiny and odd - but more than that, it's a strange texture - a bit squishy - hard to describe. 

I am so glad you are here. 

Just a bit ago, I was telling my sister-in-law how I am lucky it's "just my hair" without any big health impact. She said, "but, it's your APPEARANCE, that is SO IMPORTANT"!!  And here I am, trying to keep some perspective...  People can be strangely unhelpful, but I don't blame them, it's hard to know what to say. 

So glad you are all here for me to ramble on. Bises. 

Comment by CurlyK on November 1, 2018 at 2:16pm

I called my insurance company today to ask if they would cover my hairpiece and it’s maintenance. I pretty much knew the answer would be “no” and I was right. They will cover wigs for cancer patients who have lost their hair due to chemotherapy but not those of us who have lost it permanently due to CA. 

For the first time since I was first diagnosed, I cried. Such a cruel disease and to have to pay for it in such a way seems so unfair. 

Has anyone found an insurance company that DOES cover this? 

Comment by 2Dachshunds on November 1, 2018 at 11:29am

Brewing my spearmint tea now!  Hope this helps.

Comment by Halfbakedwho on November 1, 2018 at 11:23am

Oh and would love pictures too please Liz, thank you!

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