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: 602
Latest Activity: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

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Comment by Debs on November 3, 2013 at 3:18pm

Rita thanks for that info.  I have taken my 4th dose of doxycycline tonight and so far no tummy probs.  However  I will be defiinately going to the health food shop tomorrow to get a probiotic as we are going to be on this drug for several months so we do need to be extra careful.

Comment by Rita - Canada on November 3, 2013 at 10:46am

Debs, I have been on Doxycycline, taking it at dinner and have taken a good strong probiotic @ bed as I was told at health food store to keep those 2 apart . Anyway, no stomach problems.

Comment by Debs on November 3, 2013 at 6:26am

Ann thanks for that info... I will try it too.  thanks ladies with reassurance that the dents do fill in after injections... if the doxycyline doesn't work I may have to try the steriod injections as a last resort.   I am going to use a probiotic whilst on the doxycline to after reading all your advice.  thanks v much. XXX

Comment by Pam on November 2, 2013 at 5:45pm

Looked at dream hair blending site and it says its out of stock until after November 15th! It does look amazing in the claims it makes.

I can`t see how it would attach to cover the sides and front hairline though, as it appears to be a system which uses your existing hair, to pull through a net to add the new hair piece.

Comment by Jules UK on November 2, 2013 at 4:05pm
Just followed a link on this site to Dream Hair Blending Enhancements website. Sounds too good to be true! If anyone wants to take a look, it would be interesting to know what others make of it. X
Comment by Ann on November 2, 2013 at 2:00pm

Hello.   Just reading comments concerning fish oil.  I'm trying to follow the autoimmune protocol by Dr. Furhman.  Also joined his member center and asked advice regarding FFA.   One of the doctors responded advising fish oil due to PPAR agonist properties - similar to diabetic drugs.   don't understand the science, but thought it was worth a try.  When I asked how much,  the answer I got was 2,000-3,000 mg of EPA - to try it for 3 months to see if it makes a difference.  If not, to discontinue.  

I had to stop taking hydroxychloroquine because I was getting frequent migraines.  Been off about 3.5 weeks and still getting migraines.  Saw my GP yesterday and we agreed it wasn't the hydroxychloroquine so I will see if I can get back on it and give that a try.

 

Comment by Mandy on November 2, 2013 at 11:48am
Thanks Deb I will check them out x
Comment by christiekd on November 2, 2013 at 8:24am

Hi Debs, I, too, had injections 2 times 2 years apart.  Both times my head dented and both times it has returned to normal.  Also, be careful with the doxycycline as it can be hard on your stomach.  Make sure to take it with food, and you might want to consider taking a probiotic at the same time because along with the bad bactieria, it also kills the good bacteria in your stomach.  I had a lot of stomach aches with it and found it somewhat hard to take.  That's why I switched to minocycline which worked just as well for me as doxy, but seemed to be easier on my stomach.  However, I have digestive issues as well so maybe it was just me. :-) 

Comment by Debs on November 2, 2013 at 4:17am
Comment by Debs on November 2, 2013 at 4:08am

Hi Ladies, saw my derm yesterday.  Been taking plaquenil twice a day for 8 months.  Hair loss has slowed to about half what it was before but still active.  Derm has now added doxycline twice a day in addition to the plaquenil.  I go back in 6 months. 

Steriod injections:  discussed using them, I asked questions about the dents they can cause.  Derm said dents caused if injections not done properly.  I asked if they go away with time.... answer is NO, dents are permenant... I have decided not to risk further disfigurement to my scalp.

Have a good weekend.

 

 

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