Replies to This Discussion

Permalink Reply by sammi on June 28, 2016 at 7:14pm

Thank you for reporting back . Went to see dr harries and he mentioned the sunscreen.

Permalink Reply by DragonandFox on July 10, 2016 at 10:04am

guys, I'm struggling with this "Sunscreen" objection....I wish Dr B had been more specific about what it is exactly that's the problem in "sunscreen!"  Is it the Zinc Oxide?  because I found her saying this, "What about shampoos?  Dr. B: Choose shampoos that contain zinc. They inhibit testosterone, which clogs the hair follicles, preventing growth." from an interview.

If the Zinc Oxide is non-nano particle Zinc in an organic product, does that make a diff?  I really want more concise answers than, "wear a hat."  I'm considering calling her office tomorrow because the majority of other Dr's are not saying this. My Dr and discussed that there really are only a few Dr's who can be Considered the experts on this Disease and mine is one of them.  She told me Columbia University was just given a large Grant (YAY!!) to "finally" start a study on Lichen Planus which I equate as the hand to which FFA is a Finger so it WILL be studied at Columbia U!  I really hope they will start a clinical trial that I can participate in, as long as it's not anything with Sulpha, anti inflammatory pills that can activate my ulcer, or anything that will make me gain weight, feel tired, give me cancer.....etc etc etc.

Permalink Reply by DeniseC on July 12, 2016 at 2:17am

Hi

I am convinced my FFA is linked to lichen planus. I was diagnosed with LP about 13/14 years ago - the hair loss started after that (not sure when as it was so gradual). I was told by my medical consultant that it was definitely linked.

I also had/have on occasion, real problems with my gut, which I am equally convinced is linked to LP.

Denise

Permalink Reply by Ana_Brazil on July 12, 2016 at 11:26am

Definitely need to increase our immune system, this can have a difference in our whole body.

Permalink Reply by Embo on October 4, 2016 at 8:10pm

Do you have any more details on the Columbia Grant? I live nearby and would love to follow their work.

Permalink Reply by Ana_Brazil on July 11, 2016 at 5:44pm

Hi Stephanie, thank you for sharing this information and I am looking forward to more.

I am an American-Brazilian, current living in Brazil, and by way of biopsy, I was diagnosed with Frontal Fibrosing Cicraticial Alopecia last year.

I have been loosing hair for about 10 year, it seems, it was a slow process and I first notice the hair loss in my eye brows and my dermatologist thought it was related to Androgenetic alopecia.

The doctors I have seen here in Brazil, have not have much experience with FFA, and each one I saw had a different treatment to deal with it. I decided to go to a University professor, and he had some experience with some cases, and he was not very encouraging. Although the treatment we did with topic corticoid and some very mild oral corticoid had some temporary effect. However I had to move and now I am going to a different professor for her opinion.

I found a comment here of a treatment that had some results here in the site, and I have asked the doctor for more information:

 1) C-Tacrolimus 0.1% solution. Apply 2 ML to scalp twice daily. 2) Finasteride 5MG. Take ½ tablet by mouth daily. 3) Ciclopirox Shampoo 1% - leave on 3 min. when shampooing hair. I’ve had very good results. No further loss of hairline and regrowth around the temple and over ear.

I am new to this site and I was happy to see there were a conference and that you were sharing all this info with us, and I wonder if they talk about treatment and results.

I would appreciate any feedback that I can share with my new doctor, and I am also considering taking time off from work and going back to the US for a consultation, and I wanted to ask what doctor or hospital you would recommend, please?

Thank you very much!

Ana

Permalink Reply by Lo on July 11, 2016 at 7:42pm

Hi there Ana! Welcome. May I ask how much you have lost in the 10 years? Are you still able to wear your own hair? I've been losing for 6... And t has been fairly slow. I don't use any of the meds you listed except for the finasteride. Although I take 5 mg a day.

Permalink Reply by Ana_Brazil on July 12, 2016 at 11:15am

Thank you!

It has been a slow process and I think I have probably lost about 1 inch to 1/12 inch all around. I have the Nicolas Cage look, so I lost more in the top area. I have very little hair for bangs now. I would consider an implant, and for that the inflammation needs to stop for 2 years. I am also considering acupuncture, and the Chines medicine connect the kidneys to hair loss, so I am trying to clean and keep my kidneys clean. 

Have you seen any result with the Finasteride, how long have you been using it, please?

Permalink Reply by Nerida on July 14, 2016 at 7:50am

Thanks. Great info. Yep I've got a super bump on my forehead and I'd agree that it runs in families. Mum and I both have FFA. Sunscreen is an interesting point. I have pastey white skin and sunscreen allergies. I use ultrasuitials matifying sunscreen because it is meant to have a lower chemical load than many sunscreens. And it is the only sunscreen I'm not allergic to that I can find. it would make sense that problems are more likely to be with chemical sunscreens as these are readily absorbed into the skin and although physical sunscreens (zinc or tantaium dioxide) are absorbed into the skin it is not to the same extent as a chemical based sunscreen. An interesting point is that chemical sunscreens work by a chemical reaction between the uv Rays and the chemicals in the sunscreen which at first is occurring on the surface of the skin but as the sunscreen absorbs deeper into the skin the chemical reaction is occurring deeper. This reaction causes the production of free radicles (the bad guys that alter your cells and can give you cancer). That's why they tell you to reapply after 2 hrs so that you are putting another layer of sunscreen on so the chemical reaction is occurring on the surface layer again and not deeper down. If you can reapply get out of the sun. Is there a chance that the chemical reaction from the
Sunscreen is damaging the cells in a unique way that says "hey I'm going to be a freaky cells now that makes your hair fall out." ? Fascinating. Can't wait
For info on diet/nutrition.

Permalink Reply by Ana_Brazil on July 14, 2016 at 1:05pm

Hello!

Yes, I am concern about sunscreen now, related or not to the FFA.

I wonder, as I never used it before, I am using now that I am in Brazil, and since I have been loosing her for over 10 years... I don't think it is related. I actually never put anything on my skin, I think I am more of a "tomboy", since I am the only girl in the family.

I believe that once you have the inflammation, our skin is sensitive, and it will be sensitive to any product. I was thinking they are saying this because sunscreen is what we use these days everyday in our skin. Did they have any specific scientific response?

Unfortunately, after my stressful separation I wanted to feel better about myself, and started to use many different products on my skin, and did lots of stuff with my hair for many years, which I had never done before, and I truly believe it open a door for my immune system to attack a fragile area, and not saying it is the least, but it was my hair and not another organ.

I did a treatment with corticoid topic and oral (very light on the oral) and also some local treatment with infrared light, and quantic therapy, and this one really helped me. It is a therapy based on Quantum physic (I know this is far out, but Quantum physic is far out), and it involves around our brain and how powerful we actually are to make our own reality. That made a huge diference in my life overall, I started to believe I could do things, I could get things, and I did!

I think medication is importante, and it will work, if we BELIEVE it will work. That is the hardest part, to believe we have this power! Sorry I might start to sound a bit nuts =8)

When you are in a situation when doctors cannot do much to help, they turn us to anything we believe, so this is what I am doing.

Yes, I have changed my nutrition, my life style, and everything counts.

Permalink Reply by DW on July 14, 2016 at 4:19pm

Ana, you are not crazy, the mind is a very powerful tool. Attitude plays a huge part in fighting many diseases!

Permalink Reply by Isabel on July 15, 2016 at 5:40pm

Hi Ana,

I also don't think sunscreens have any relation to triggering FFA. What I think is happening is that those of us that develop this condition are more susceptible to multiple skin issues that we didn't use to have (hyperpigmentation, face redness, etc.) and those situations drive us to increase the use of sunscreens and thus the scientific conclusion (in at least one study) that there is a greater prevalence of sunscreen use in FFA afflicted people. So what I think is that this isn't really a cause, but rather a result.

In my personal case I only ever manifested skin issues (hyperpigmentation in the forearms and back) about two years prior to actually triggering my FFA. This also coincided with the loss of part of my eyebrows.

Maybe the current studies will shed more light on this relation or the lack of it.

I agree with you that the positive attitude is extremely important in stopping the disease in its tracks and I think it necessary for us to avoid stressful situations so as not to further debilitate our immune system.

• ‹ Previous
• 1
• 2
• 3
• 4
• 5
• Next ›
• Page