Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 555
Latest Activity: 2 hours ago

Discussion Forum

oral isotretinoin (Accutane), FFA and facial papules

Started by Anne Louise. Last reply by Eli1987 Jun 20. 4 Replies

I saw my dermatologist this week to discuss trying Accutane. Boy I was not prepared for the hoops I have to jump through to start it! It is enough to give one pause. However my derm estimates he has prescribed it about 10,000 times since it came out…Continue

Finesteride, Cellcept results?

Started by Irisheyes. Last reply by RoxyT Jun 12. 12 Replies

HiI am new to the group but have been dealing with FFP/LPP for a few years now. I have been to 3 different doctors. I think they get fed up and pass me on. Anyway I have an appointment on Wednesday and I know she is going to suggest finasteride or…Continue

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by Debs May 3. 64 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

FFA Returned

Started by Tina S. Last reply by HeatherG Apr 19. 14 Replies

I was diagnosed with FFA in September of 2016. I was treated with steroid injections in my scalp along with a topical steroid. My hairline continued to recede. In April 2017, I was diagnosed with breast cancer and my dermatologist recommended…Continue

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Comment by illustr8r yesterday

Hi there-

Which MooGoo product have you ladies bought as a facial moisturizer? I got overwhelmed with the choices and got Skin Milk Udder Cream. I love the smell and I can tell it makes my skin smooth but it’s a bit drying or something when it’s time to put foundation on.

Im hoping it heals the red blotches and fades the weird age spots or melasma that I have on my cheeks.

Thanks!

Comment by 2Dachshunds on May 17, 2019 at 10:30am

Thanks everyone!  I took magnesium this am and have been using the Moo Goo shampoo and conditioner for about 1.5 months.  It helped, the itching went way down and the silver discs around the hair follicles abated.  But now the itch is back and those stupid silver discs.  Shoot!  I'm taking CBD capsules, 25mg, they help with the red blotches and pain on the hairline.

Guess I need to go back to not eating bread or pasta or red sauce all of which I ate this week.  Darn. I love tomatoes!  : (

Comment by Minter on May 17, 2019 at 9:20am

BubbaLu, interesting about magnesium- I'll have to look into that, thanks for sharing!

Kandy15, I know what you mean, my dermo is very similar!   Kind of wonder what is the point of the medical degree if I am the one doing all the research on this disease ;-/  

Comment by BubbaLu on May 16, 2019 at 12:13pm

I have been on the Ketosis diet since last January and was really strict with it.  I took magnesium for muscle cramps that are a side effect of the diet.  Recently I am eating low carb but not strict Keto.  So, I stopped taking the magnesium (200mg daily).  Maybe coincidence, but I had a very itchy outbreak that was driving me crazy.  

Fast forward, I was watching a Nova series on the Dead Sea.  A woman with really bad psoriasis showed great improvement with her skin from being in that area because there is a lot of magnesium in the air.  This made me wonder if the magnesium would help my skin condition.  

I have started taking magnesium supplements again  and my itching has gotten much better.   If you try this, get high absorption magnesium, easier on your digestive system.  

Comment by Kandy15 on May 16, 2019 at 11:52am

Good job Minter!

It seems that we are forever trying to figure out ideas of how to help ourselves regarding this stupid disease.  From the research that I have done and the ideas that I have read on this site, I am more informed than the dermatologist PA.  She allows me to try different medications and even adjust them according to my reactions to them.  She tells me there is no cure and no stopping it so I think she is agreeable to whatever I suggest to make me feel like I am at least doing something to fight this and keep my hair for awhile.  Exhausting.....   

Comment by Minter on May 15, 2019 at 9:03am

Me again with more stuff about head sweat! ;-D  

I was reading on social media about this little watch sort of device that you wear on your wrist that can be adjusted to cool you down or warm you up and thought wow that is pretty neat, but it comes with a hefty price tag so gave up on that thought very quickly.  

But it got me thinking and I tried blowing on my inner wrist and that itself cooled me down right away!  To make it work even faster try licking your wrist and blowing (which isn't always an option out in the world haha)  so dab a bit of water or use a wet wipe and blow with same results.  

I get overheated and head sweaty a lot especially while getting ready in the morning and it drives me bonkers because I have no idea why it happens (well I do, it is because of stupid FFA)!!!!!

So now instead of having to sit and fan myself with a magazine or something waiting and waiting to cool down, I do the wrist thing and boom, I am a kool kat again haha!

Anyway, hope this helps someone!  This head/scalp sweating does drive me bonkers and I am certain I am not the only one :-( 

Comment by Minter on May 9, 2019 at 9:03am

Finally had the time to make some calls and find out if anyone in my area treats increased scalp sweating with botox and turns out, there isn't anyone, not even my own dermatologist!  

But I did find a plastic surgeon with a very good reputation who is willing to consult with me and do the research on this- so it is a start anyway.  

During the winter the excess scalp sweating was bad enough but now that it is getting warmer it is getting worse so I am hoping that this doctor will be able to treat me as I am so tired of being the odd one out blotting my face and dripping sweat when everyone else is cool as a cucumber and can't even blame this on menopause anymore either, it is just yet another weird embarrassing side effect of FFA yay.  

I will keep you all updated as I find out more information :-) 

Comment by Sad in chicago on April 29, 2019 at 4:08pm

Many wig and hair piece salons also have beauticians who cut and color, because after all, they need to blend or work with your real hair as well as provide your needed purchase.  Even if you are not ready for a purchase, you should establish a relationship so when  you are ready it will not be so overwhelming.  Or, you can call one of them and get a referral for someone who can manage you privately.  I had to leave my beloved hairdresser for the same reason, but she understood.  Then I found one, a referral from my hair piece person, who has a station in an independent salon type place who only handles one client at a time with a closed door.  More hassle, but doable.  

Comment by Kandy15 on April 29, 2019 at 11:59am

Hi Ladies,

I totally relate to the feelings about having hair colored, cut and styled.  I haven't been since the beginning of January and am in desperate need of the works.  I absolutely HATE going anymore because I feel like I'm on display for all of the other clients to look at me and feel sorry for me.   There are no private rooms where I go and the gal that has been doing my hair for 20 years is sympathetic but she has never seen anyone with this type of hair loss.    When I leave my hair does look better but my heart is always so heavy and I am still so depressed.  I'm more self-conscious now because my hair has thinned so much around my ears that my right ear pokes out of my hair.  I'm constantly fluffing up that area so it doesn't look so dumb.

I am sad and I am mad about what this stupid LPP/FFA has done to my life as I know all of you feel the exact same way.  Can't stand to look in the mirror.  Can't stand to dream about my plans for the future because now wigs are in it.  Can't stand to see other people with non-diseased hair and being happy in their lives.  I am SO jealous of them.

So that is my rant for the day.  Thank you all for understanding and for being here for me.  I pray for a cure every day for all of us.

Comment by Lu on April 29, 2019 at 11:49am

Thankyou Minter & Louise for your words of support. 

I went to the dermatologist today & made an appointment to have my hair done at their in-house salon - if they can’t be understanding & compassionate there no one can. 

 

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