Replies to This Discussion

Permalink Reply by Airam-FFA on September 10, 2017 at 4:26am

Hi illustr8r

What strength Clobetasol are you using? I originally was given 0.5mg and now have 500mg prescribed for two/three months.

xOx

Permalink Reply by illustr8r on September 11, 2017 at 3:22am

I'm using the 0.05% Clobetasol. I feel I should do something if I'm not taking any other drugs so I use it 2-3 times a week just to be safe. I had been putting it in a jar of CeraVe body lotion also because I was so incredibly itchy when I was first diagnosed-the itchiness has thankfully stopped. Not sure if that was FFA caused or my B-12 deficiency.

I recently went on a purging of products in my bathroom. I had so much stuff that I had bought to fight the weird skin issues and bad hair days. It was all a reminder of a bygone time-before I knew what FFA was.

I gave a try to organic face soaps and lotions but they all made me break out like a teenager. So, I chucked everything and I went back to Ponds cold cream. It's moisturizing enough that don't feel I need another product after I wash my face with it. I use Cortisone 10 on my forehead and across my brows. It has 1% Hydrochloride and I read somewhere that 2% will help with eyebrow growth. Not sure I want to ask my Derm for another prescription or not so I do that. I do have new eyebrow hairs coming in. They blend well with the microblading but aren't the brows of my youth for sure! I only use Loma hair products-got rid of all the random stuff I was buying in hopes to achieve my old hair thickness and texture. Loma leaves my hair shiny and not weighed down at all. I still get highlights put in and after I cut my hair into a pixie I'm confident that I rock this look for awhile.

The AIP diet has been a big plus to how I feel and look (I lost 12 lbs) and can get into my favorite jeans again. I'll remain strict with it till next month and then add back in coffee and eggs. I think dairy is gone from my diet for sure (kidney patients need to limit dairy anyway) and it's suggested to be gluten free after the AIP diet at the very least. That'll be tough but I feel so much better and if I can suspend or dramatically slow my hair loss I can eat like that indefinitely. Another bonus this month is that my bottom eyelashes have returned. They have been missing for a long time.

I don't know what I'd do without you nice ladies on this blog. I read what you say and it's reassuring that I'm/we aren't alone. I always call it a stupid disease. It's just the stupidest thing for otherwise healthy active woman to lose their hair in such a pattern. Is this a joke? Seriously. We make the best of a bad situation and hope it burns out. Hugs to you all!!!

Permalink Reply by Airam-FFA on September 11, 2017 at 5:31pm

Thank you illustr8r for your post. The AIP Diet seems the way to go but I need to be more disciplined to get my head around it. It is good to read that your have some re-growth - very promising.

xOx

Permalink Reply by Jacqui on September 10, 2017 at 10:06pm

So glad things seem to have settled for you illustr8r!

Permalink Reply by Christi Q. on September 13, 2017 at 10:15am

I've heard it takes about 6 months (after stopping Finasteride) for the hair to start falling out again.  I'm on Dutasteride and would LOVE to quit taking it (made me gain weight) but I'm too worried that everything I have gained, I will lose in a few months after stopping.  PLEASE keep us posted in a few months on your results from stopping it.  Thank you!!

Permalink Reply by Jacqui on September 16, 2017 at 10:17pm

My derm said Cellcept leaves your system quickly but yes Finasteride will take a few months.  I gained weight on it as well but I must say I was drinking more alcohol and eating more junk so it could have been that as well!  I ca't say I gained anymore hair apart from some baby ones but maybe it slowed my loss but who knows!  We need some clinical trials on all our drugs to take the guess work out. xx

Permalink Reply by DragonandFox on September 13, 2017 at 9:44pm

Jacq. I am very much looking forward to hearing how you fair med-free.  I was diagnosed in Jan 2015 and have been using clobetasol every day since!  When I stop the inflammation gets terrible and my scalp turns beet red and the pain can be unbearable. Though that makes me "unlucky" I appreciate that I'm lucky to have SO much hair my loss is masked fairly well.

I've had a lot of drama with my Doctor's office this week because they treated my urgent need for the Clobetasol refill as not urgent at all. I'm tired of being treated as if my scalp pain is "in my head" no pun intended.

Permalink Reply by Airam-FFA on September 13, 2017 at 11:26pm

Hi Dragon&Fox

What strength Clobetasol are you using? I did have Clobetasol propionate (0.5mg)and have now been prescribed *Etrivex 500mg shampoo clobetasol propionate and *Elocon scalp lotion 0.1%w/w mometasone furdate. I have to use them both once daily for two/three months. I forgot to ask if This strength should only be used for a short time. I have noticed that my scalp irritation is more evident with using the shampoo and more hair than before seems to be falling out.

xOx

Permalink Reply by Jacqui on September 16, 2017 at 10:13pm

Oh no Dragon&Fox, so sorry about your inflammation and being treated so badly trying to get relief :( Hoping you have had some relief since.  I have never really had much inflammation.  I can see my activity and have the itchy, crawly feeling.  This was much worse on my eyebrows that my scalp but now I have not much eyebrows it's only occasional. xx

Permalink Reply by AnnieMay on September 18, 2017 at 3:41pm

Is there anything you do that helps with the itchy crawling sensation? It is a constant reminder of this awful disease

Permalink Reply by Jacqui on September 19, 2017 at 6:36am

No AnnieMay as really it's not that bad.... I have itching at the nape of my neck at the moment but as I said to my derm, I scratch at it now and then but not enough that I am asking her for relief for it. x

Permalink Reply by AnnieMay on September 14, 2017 at 1:33pm

Hi Jacq- I was officially diagnosed in March but I'm sure it really started last summer when out of the blue my scalp started itching like crazy. Just like so many of us I started losing the hair in front of my ears, temples and forehead. My eyebrows started disappearing a couple of years ago but of course everyone said it was age related. My dr has only prescribed topical steroids and now she has me using Tacrolimus solution every other day. I feel like this has all happened so fast for me including so many changes to my skin. I've thought about other medications but I seem to get every side effect and with no idea if anything really works right now it's not worth it to me. 

And just like you every time I use the topicals I'm reminded of this awful disease. In some ways I honestly wish I didn't even know I had FFA because it has a way of taking over your life. This is a 'lonely' disease and I'm so thankful for everyone here. Good luck to you and all of us as we try and navigate our way through all of this. 

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