Comment

Comment by Afraid on February 8, 2018 at 10:02am

Ah lovely to hear continued camaraderie!  I couldn’t access site either due to warnings...I also had a private message from someone on the site last week saying they had something that would be of interest to me... i can’t tell you the irrational, illogical, crazy thoughts that ran through my mind... mostly centring around potential cure/magic wand scenario...only for it to be non hair relate and a fraudulent scam requesting money!!!  

Keep going everyone.  Can’t wAit to hear about dr FM :-)) 

Comment by Liz Lov on February 8, 2018 at 4:14am

@Halfbakedwho Good luck with Dr Famous Man! Do let us know ;-)

Comment by Halfbakedwho on February 8, 2018 at 3:04am

Hi everyone, it’s good to see you all back here. It’s maybe small consolation, but to hear that everyone is going through the same BS with the doctors and drugs and styling makes it a tad less awful, in that I’m not alone. I use my freaking Clobéstal (français) every damn day. Now I’m putting it at the nape of my neck too, where I feel the hair going. 

So - illust8r and Beez and AnnieMay and Minter and Plf... and welcome ahmed... I am just soooo glad you are here. I too miss the weight of my hair, the intensity of my big fat curly hair that I could get pretty long, once upon a time. 

Here is the strange new annoying symptom of the day (and it’s only 9AM!) - my glasses are bothering me, above my ears where the hair is going. It’s like the plastic is irritating my scalp there. I can’t tolerate my contacts all day anymore b/c dry eyes. 

I am going to try a new dermatologist, because my normal lady is only available ONE THURSDAY MORNING a MONTH. In Freaking Paris. So I am going to Dr Famous Man who has written books on alopecia, and does grafts. However - mixed Google reviews - apparently Dr FM has an Ego. Why does this not surprise...

Snow here today, everyone is late, not a bad thing. I’m going to Not Look at my Hair now. Bises, chicklets. 

Comment by ahmed on February 8, 2018 at 2:23am

Hello, I have been suffering from alopecia for a year in the beard and after a conflict I recovered from them but I started to reappear what is the solution?

Comment by illustr8r on February 8, 2018 at 1:48am

@Donna My family dr was surprised that my Derm handed me a bottle of Clobetasol with little instruction. I was using it maybe 3 times a week as “maintenance” and she insisted I stop completely for 2 weeks. After that, only as needed for really bad pains/itches. It thins the skin but she was very concerned about it’s effects on the liver. So, I don’t use it at all now if I can help it. I have a big bottle of castor oil instead.

All these drugs...and none work for sure and they all have scary side effects. It sucks.

Comment by Donna on February 8, 2018 at 1:21am

Is anyone one using closbestatol right now? I copied & pasted the paragraph below which I found,  I’m a bit concerned that I will have been on this medication for 8 months by the time the doctor wants to see me again in May.  

Clobetasol propionate is considered to be very potent; because of that, it's not recommended for use byond a few weeks or for an extended period of time. Clobetasol propionate is marketed under various names in the United States; Clobex, Cormax, Temovate and worldwide; Tenovate, Dermovate, Dermatovate, Butavate and, Movate.

Comment by AnnieMay on February 8, 2018 at 12:35am

I SO understand Beez. I just had my haircut and it was devastating to see the look on her face as she tried to style my hair differently. No words. . .I looked back at so many posts here when I was first diagnosed and we are still all asking the same questions years later, dr's are still grabbing at straws trying to find something that might help. Makes me angry too. . .Yes it's just hair and that is hard enough but for me it's my skin that is the most devastating. Even if I have to wear a wig at some point there is no way to hide my skin. . .

Comment by Plf on February 7, 2018 at 10:43pm

Hi Beez, feeling for you, I'm still in deniel..alas I also had hair appointment this am, my daughter is getting married in 9 weeks so I'm in limbo land regarding treatment's, from what I've read nothing is a sure bet, it's deciding between a 50 % chance of halting progression, ? Side effects of drugs, no it's not life threatening but devestating, 

Comment by illustr8r on February 7, 2018 at 10:36pm

@Beez I miss the weight of my hair. I feel exposed all the time. Right now is the worst time for my hair, a week before a haircut. My stylist cuts down my good hair so there isn’t as big of a demarcation between thin and normal. It blends well but after 6 weeks the good hair is poofy like everything is fine and the thin wispy front continues to shed/recede albeit slowly. My haircut looks intentional but by no means do I feel like myself. Damn frustrating.

Comment by Beez on February 7, 2018 at 8:10pm

Sadly, after months of feeling 'at peace'' with my slow hairline recession by closing  my eyes at the hairdresser, not obsessing in the mirror and making less and less trips to the dermatologist ( who hasn't prescribed anything that works anyway) I took a good look this evening after a shampoo and was stunned. it won't be long before I need to work on a new hairstyle to hide the loss. It's so ugly. I feel so angry....what's so damn hard about finding a cure for this? I think it's not worth the money for pharm  companies to put millions into research when they won't make that much money on the treatment. Better for them I guess to stick with high monetary returns from the likes of Viagra, flu shots, diet pills, and every antihypertensive under the sun. Ugh, infuriating. 

• ‹ Previous
• 1
• …
• 103
• 104
• 105
• 106
• 107
• …
• 507
• Next ›
• Page