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Comment by ammie on March 20, 2018 at 7:30am

MJ, thanks for posting about the Facebook group. I looked them up and submitted a join request. 

Comment by Afraid on March 20, 2018 at 5:24am

Hi, are there any ‘success’ stories for the management of FFA on the Facebook site? 

Comment by MJ on March 19, 2018 at 11:24pm

Lynne555, I don’t know how to share the link but if you do a search on Facebook under Frontal Fibrosing Alopecia  FFA it will come up.  The background is blue puzzle pieces and it says it is s closed  group with 426 members. 

Also, I recently started using black castor oil on my right eyebrow.  I am continuing to use Rogaine on my left which I have been doing for years.  I am testing to see if the Castor oil works as well.  I gave it a little try last week on part of my scalp and had some moderate itching and burning.  I have never really had much in the way of irritation associated to my FFA so I think it was the castor oil.  It doesn’t irritate my brow.

Comment by illustr8r on March 19, 2018 at 9:57pm

@Lynn555  Did your dr. check your kidney function?

I experienced weird hair symptoms for years- flat, lifeless, odd ways it liked to part itself and some shedding. I went in to a new dr. to find out what was happening and she discovered raging high blood pressure, anemia and low vitamin D. After a bunch more tests, I was diagnosed with stage 3 chronic kidney disease. If not for my vanity, I'd have never known and It was almost too late! My hair had suffered for years because of low iron/D  but it bounced back after I got my iron straightened out-then menopause hit. :(

FFA is so weird. Castor oil has eased my tight scalp and has given me a few extra sprouts on my crown and sides. I find it very soothing and have never had a break out from it. It could be that your flare has coincided with the use of castor oil (but maybe not, as well). 

Hang in there- dealing with this stuff is exhausting. It does get better over time but there are still sad days for sure.

The page on Facebook is LPP Let's Put Out the Fire. :) 

Comment by Lynn555 on March 19, 2018 at 9:32pm

The last time I did castor oil was Feb 20th. I saw I noted it on my calendar. Maybe my follicules ended up clogged? 

Comment by Lynn555 on March 19, 2018 at 9:30pm

Oh wow re: castor oil . Do you know that all this itching started right after I used castor oil! So before that I noticed how thin my hair was around my sides and forehead. I decided to try castor oil. My head was so tingly and itchy but I thought it was the rosemary oil I had put in it. The next day I just used the castor oil and same itchy, burning feeling. So that was the end of that! 

But I did that weeks ago. So I would be surprised if I'm still reacting? I also only use fragrance free products, never perfume or added scents. My moisturizor for my face is La roche posay Lipikor balm, which I've been using for years. 

I've been wracking my brain trying to think if a product caused this but I can't think of anythign besides that castor oil from a few weeks ago. Weird! 

Comment by Anonymous on March 19, 2018 at 9:15pm

Lynn555  I get something close to that at the top of my forehead and sides. I've traced it to Black castor oil products or product chemicals. I've used Nuetrogena tsal shampoo with Free and Clear conditioner. It feels sore but no bumps or redness. My iron level ran low too. Good luck with treatment.

Comment by Lynn555 on March 19, 2018 at 8:23pm

@MJ can you give me the link to the facebook group? Thank you. 

@AnnieMay,  I went to a walk in clinic today and he doesn't think I have folliculitis. I was hoping this was something simple. Doesn't look to be that way. He took a scalp swab but I don't have the results yet. Probably tomorrrow or Wed. He is more concerned about my low iron levels. I'm not absorbing iron but not sure why. I'm taking Ferramax 150 mg twice a day but my level is only 23 and in Oct it was 24. Lowest level was 10 in 2014. So he is looking for a bleed now. Have to do a stool sample (gross). 

He did give me Taro-Clobetasol scalp lotion for thr red bumps/rash. 

So far that is all I have for the update. 

Comment by MJ on March 19, 2018 at 6:14pm

Hi all,  just wondering if many of this grouo  are also on tne FFA private Facebook group.  I recently joined it and it is growing weekly. There are so many of us out there!  

MJ

Comment by AnnieMay on March 19, 2018 at 12:17pm

Afraid- So true. I get most of my information here. Lately for me everyday presents a new and confusing symptom (my scalp feels like it's on fire) with no real understanding if it's a side effect of the steroids or tacrolimus or if it's FFA and no clear path to resolving any of it. Totally agree that dermatologists should be looking here to learn more about what we face everyday!

And Lynn555- please update us. I'm having the same issue right now

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