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Comment by Rachel218 on June 20, 2015 at 3:10pm

I don't know if anyone else has experienced this but I got my menstral cycle yesterday and my scalp was very sore and tender and I noticed how much my more my hair is shedding. This just leads me to believe that there is a hormone component to this. Has anyone gone the route of seeing an endocrinologist ? I'm so afraid of continuing to use Rogaine as I've been shedding much more and how much thinner my hair looks . I've been on it for about a month now and I do notice little hairs sprouting on the front which gives me some hope but with all this extra shedding it really scares me!

Comment by Brooke on June 18, 2015 at 9:00pm

I'm really interested in the comments about omeprazole since I've been taking it for years and have FFA.  I checked online for side effects and alopecia is listed as a rare side effect of the drug.  I'm gradually decreasing the dose, starting with one capsule every other day, because I've read you can experience a rebound of acid reflux otherwise.  I'm replacing the omeprazole with famotidine, which is supposed to be safer.  Also, someone mentioned they are from Portland, OR and I'm wondering if you are seeing Dr Roberts/Desai as I am. Dr Desai said there might be some interest in a support group among her Portland patients but neither of us followed up.  I think the Portland FFA member mentioned some success with finesteride--I'd like to try the finesteride again but it made me depressed when I first tried it.  Right now I'm doing the injections, doxycycline, and plaquinil and hair loss is minimal.  I'm seeing some regrowth of eyebrows using rogaine once a day, even though the doctor said it wouldn't help.  Thanks to all of you brave contributors to this forum; it is really helpful for technical info and moral support!

Comment by Annie on June 18, 2015 at 11:28am

Mel, I also had extreme scalp tenderness while using Clobetesol, but I think it helped to keep my inflammation under control.  I could tell a huge difference when my doctor took me off from it for a few months.  I now use a different topical called Betamethasone (much more expensive!), which also causes tenderness to a lesser extent.  I think I'm just sensitive to the topical steroids.  

Comment by Sas Holland on June 18, 2015 at 11:05am

oh really Liz, thanks for telling me, I did not know that! Thanks for telling me I will remove the pictures that show my FFA  off this site!

Comment by Liz on June 18, 2015 at 4:04am

Morning ladies. I hope everyone is well. Just a reminder to anyone new or who doesn't know, if you post a picture on this site it will then show up on a Google image search for FFA. Some of us have found this out the hard way, including myself. So, unless you want your photographs shared with the world please email them privately to each other.

Comment by Mel on June 18, 2015 at 12:23am

Oh my goodness. So much experimentation and so many different experiences. I wish it was simpler. Thank you sallylwess, Cheryl and MJ. All very interesting. ...that is amazing to hear of your hairline hair growth, Cheryl.

Comment by sallylwess on June 17, 2015 at 11:33pm

Mel, Yes, I had problems with clobetesol.  It irritated my scalp very badly.  It even irritated my hands and I was applying it with gloves to my scalp because of the hand irritation.  Finally, when my scalp kept getting worse, I told my doctor what was going on.  He said that it must be the clobetesol and he prescribed another drug called "DermaSmooth."  It made me break out in a rash.  I also developed a rash on my face and neck the day after my third series of Kenalog shots.  So, I know these are anti-inflammatory drugs, but they can cause problems. I took pictures to show my doctor so he would see what happened.  As a side note:  I saw the dermatologist yesterday.  I am not over this by any means, but my scalp looks better with no drugs than it did when I was treating the disease.  

Comment by Cheryl on June 17, 2015 at 11:15pm

I use Hydrocortisone Butyrate, a similar drug to Clobetesol, 3 times a week. It has worked well for me, and my scalp is doing much better. I am also taking Plaquenil and finasteride and am having some success with new hair growth on my eyebrows and hairline. I am part of the research group out of Portland Or. My dermatologist has over 100 patients with FFA. My dermatologist is surprised to see the hair growth, I am realistic and don't expect tons, but it is a step in the right direction. You might see if you can use something besides clobetsol, everyone responds differently to drugs. I hope this helps :)

Comment by MJ on June 17, 2015 at 10:54pm

Iuse the clobetasol solution which is a clear liquid that can easily applied in small drops. Never had any problems from it. I was first given other forms like a spray and a cream and although they didn't irritate, they Made a mess of my hair.

Comment by Mel on June 17, 2015 at 10:23pm

I started Clobetesol about five days ago, 2x per day. It seemed good on day 1-1.5. But now I really feel it is causing redness, inflammation and hair thinning! The dermatologist said that is not possible since it's an anti inflammatory drug, and she said it's meant to help slow or stop the underlying cause. I don't want to be stupid and go against her advice to not treat this and I really want my hair to calm down and stay put, but I think tonight I am going to wash off that area (to wash off this morning's application) and just go back to applying something like coconut oil, which maybe I was imagining, but seemed to be calming it??? Has anyone had trouble with Clobetesol?

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