Comment

Comment by Elizabeth W on February 6, 2019 at 4:00pm

Key West City Commission voted yesterday to ban sunscreens with oxybenzone or octinoxate to protect the coral reef around the Keys. Hawaii and Palau have similar bans.  Interesting to see this article on the Web after our discussion of these chemicals in sunscreen.  Here is the link.  NPR quoted the Miami Herald.

https://www.npr.org/2019/02/06/691913378/key-west-votes-to-ban-popu... 

Comment by Kandy15 on February 6, 2019 at 3:30pm

Mary, I was officially diagnosed through biopsy in April 2016 although I had developed a bad rash all around my hairline from one ear to the forehead to the other ear before I was told it was LPP.  I went to 3 doctors in 9 months, including the dermatologist who finally did the biopsy.  I was told it was just a rash by all of them and to use over the counter cortisone cream, which didn't help.  The dermatologist prescribed doxycycline and clobetasol in April 2016.  The doxy was 100 mg twice a day and the clobetasol was just once a week. I think I had been ignored for so long that it may have been too late because I lost 1 - 2 inches of hair from my temples to my ears. ( Hate it when the wind blows ).  Fortunately my forehead hairline was not disturbed at that time.  The hair loss was only at the sides and  seemed to stop after about a year so the doc stopped the meds and told me I wouldn't lose any more hair.  I was so happy and went on my merry little way, enjoying life. 

Then this last November I got the dreaded rash on my forehead and it was gobbling up my hairline at a fast pace.  I went to a different dermatologist because the other one moved away.  She put me on doxy again but only 50 mg once a day and tacrolimus ointment which I got no results from.  I'm now on hydroxychloroquine for about 4 weeks now and CBD oil on the hairline that doesn't seem to be working either.  Changed my diet to gluten free with very minimal dairy and sugar only if I sneak a gluten free cookie. I keep seeing new disease right behind the effected hair/bald parts that is red and looks like tiny little black dots, probably where the follicles are dying.   Yesterday I started having the burning and itching all over my scalp that I have only had at the beginning of all of this.  New fresh hell to contend with.  UGH!  I hate this stupid disease.  But I want to fight and do whatever it takes to try to keep the hair I have.  

My new dermatologist is a PA and I thought that with her being a woman she would be more concerned but she's not.  She told me that a lot of her patients who have hair loss problems just wear wigs or hairpieces and get on with life and she suggested that I do just that.  

So frustrating, all of this.

Hugs to all of the beautiful ladies who check in here.

Comment by Minter on February 6, 2019 at 10:34am

illustr8r - how interesting!  Nasal spray on the scalp?  I wonder if the antihistamine would help with the histamine which would cause the itching right?

I am now showing my glaring ignorance about histamines!!  But if this works, it would be wonderful :-)  I'm off to google now, though I doubt if there is much out there about this and thank you for posting/sharing as I am not on FB!

Comment by Minter on February 6, 2019 at 10:31am

Hi Mary,  I'm sorry this has flared up again, I have never taken doxycycline so I don't know much about that.  But I just wanted to say I'm hoping it will all calm down again for you and that your appointment will go well when it finally comes around- March seems so far away but February is a short month so it will be here quickly!

Comment by illustr8r on February 6, 2019 at 2:00am

I saw this posted on the FFA site on Facebook today. I have never heard of this treatment before so I thought I’d copy/paste it here for those who aren’t on FB. The lady said that the medicine is over the counter and she sprays it on her hands and rubs it into her scalp.

****

I posted a while back about a doc appt in NYC. I saw my doc at Columbia again today. She's added an allergy treatment nasal spray that I will use on the redness in my scalp.

NasalCrom allergy spray.

Findings from the latest research show that many FFA people have a strong presence of mast cells. "A mast cell (also known as a mastocyte or a labrocyte[1]) is a type of white blood cell that contains many granules rich in histamine and heparin."

Comment by Mary on February 6, 2019 at 12:21am

I am so upset.  I was diagnosed with FFA 5 years ago.  The doctor  prescribed doxycycline + Desonide cream for close to a year.  I was one of the fortunate people who responded to the treatment.  I had "gotten over" it emotionally and physically.  Now I am losing what was left of my eyebrows and my forehead around my hairline and scalp are driving me crazy again with itching.  My dermatologist has moved and I can't get an appointment at my clinic with another dermatologist until late March.  What really complicates this is that I had bladder cancer about 9 years ago and have been kept cancer-free with periodic immunotherapy treatments.  I have a 3-week series beginning the end of February.  The FFA started after one of the bladder cancer treatments went amiss and I am so scared of what is going on.  I don't want to lose my bladder and I don't want to lose my hair either!  Has anyone else responded to doxycycline and then relapsed?  Did you respond the second time?

Comment by Plf on February 5, 2019 at 11:55pm

Hi Lu, just a quick question, when you had your appointment with Sinclair dermatology did the push the kerestase hair product range they have on their site, that supposedly stimulates the hair follicles

Comment by Jules Australia on February 5, 2019 at 11:47pm

Ps Kandy15  I noticed that comment on your page reaching out to you & think you're right it looks a little 'sus' to me ... probably best to ignore it .... beats me how some people can make comments when not being a member .... guess there are always intruders who somehow know how to breakinto websites without permission !?

Comment by Jules Australia on February 5, 2019 at 11:41pm

Kandy 15, I can totally relate to your emotional feelings, living with the chronic symptons of this condition, as I'm sure many others here can.  I try so so hard to stay strong, but find the symptons can be so challenging,; when the offered treatments are so hit & miss & mostly ineffective and it seems for many to be one sympt8n after another, not knowint each day, week, month, year, what's in stall ahead; how we'll manage to keep adapting to the changes in the loss, other symptoms, side effects from harsh drugs, the dilema/quandry of whether to take drugs/reatments or NOT..... well yep it can be "all consuming" .... though I am so GRATEFUL for this site/forum, & all th beautiful ladies here expressing their feelings etc, as I'd probably otherwise (6&half years down track now) with  this b#s@a#d condition, possibly gone a liitle 'crazy' by now.... it validates what I'm feeling, experiencing, the negativde psychological effects on your peace of mind & that you're not the only person in the world who feels the way you do trying to livè a happy life with a condition that can sometimes make that really HARD ... sorry for the vent, but necessary today .... sorry you had to join this club but hugs to you &all of you here & thx for listening  xx

Comment by Kandy15 on February 4, 2019 at 8:07pm

Wow! Unbelievable!  I thought the request was odd so I am very happy that you shared your story.  I have gone back to look at almost all of the comments on this blog.  It has been such a big help to me because I am an emotional mess just worrying about what is to come.  I know I have to just handle it and I will.  I'm just trying to come to terms with it.  Like the CARF website says, Not knowing is the hardest part.

I have read your comments along your journey and I appreciate your brave story, Afraid.   

Thanks to everyone for being here.

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