Replies to This Discussion

Permalink Reply by lacazette on August 24, 2015 at 10:06am

You're right here in France they give accutane like a normal pill for moderate acne. They don't talk about the hundred of serious possible side effects, it's quite a shame!

I'm not aware of america, but do you think a petition could help us to have access to that aldh1A1 inhibitor? this thing could help our hair and the LPP, my hair go worse and worse, so it's frustrating to know that something could really slow the processus and fight the hairloss factors.

In France we are several forum members who contacted the association for médications side effects, we hope they will help us to have access to that molecule.

But I really hope those researchers in US are planning to test this chemical compound soon to see if it work for us as good as in the mouses studies.

Permalink Reply by DragonandFox on August 24, 2015 at 10:20pm

I don't know Lacazette if a petition could help. But if we created one, I think we need more understanding.  I know I do.  I mean, I started the chart and only 4 other people filled in info.  We'd need more than that and 2 out of the 5 of us never used anything with Retinoid and 1 out of the 5 did not respond.  I can't help wondering if they might have been exposed, but how and what?'

I stopped using the tretinoin and though I still have loss and inflammation it seems the inflammation takes 3 days to come back rather than 1-2 and I might be imagining it but I might be getting more baby hair growth along my hairline..

Still, I'm going to see a new Dr. Friday and I printed out the article to show her. She's with Columbia University dermatology hairloss dept so hopefully she can shed some light onto this article and what it means and IF it can provide hope!!

Permalink Reply by Mary on August 27, 2015 at 1:12pm

I'd sign the petition!!!

Permalink Reply by DragonandFox on August 27, 2015 at 10:04pm

Hi Mary, if you haven't yet, why don't you go to the link and fill out the form I created. The more people we get to fill it out the better chance we have. I'm seeing a Dr from Columbia University who specializes in Alopecia tomorrow. I can show here the chart.

Permalink Reply by Lo on August 28, 2015 at 5:51pm

Hey dragon! Any news/new things/updates from the Comumbia doctor?? Let us know. Thanks so much!

Permalink Reply by Charlotte on August 31, 2015 at 8:51am

Hi Dragon&Fox, did you get a chance to show the chart to the Dr?

What did she say?

Thanks for your update

Charlotte from Switzerland

Permalink Reply by Classical Anne in NC mountains on August 28, 2015 at 5:46pm

Dragon & Fox, I just discovered this request and filled in the Google spreadsheet just now.  Hope it's helpful to someone!

Permalink Reply by MJ on August 28, 2015 at 7:16pm

So sorry. How do I get to the spreadsheet?
MJ

Permalink Reply by DragonandFox on August 31, 2015 at 7:14pm

Hi MJ.  It's on the 1st page but here it is again.

I think for someone to fill it out, they have to have a google account.  Sorry about that. I know there are people like my husband who are not into having to log into Google to see and participate in things.

With that said, here's the link:

https://docs.google.com/spreadsheets/d/1aeFfbgrTwmr0v-kWpWX0gSJk06U...

Let me know if you have a problem putting in your info.

:)
D&F

Permalink Reply by DragonandFox on August 31, 2015 at 7:46pm

Hi Guys,

So, I saw Dr Bordone from Columbia University Dermatology Dept.  1st things 1st....Guess what?!!!  She told me she saw 3 other people JUST last week (me makes 4) with Frontal Fibrosing Alopecia.  She said, "We're now going to start research".  I asked her "when" and if I was going to be a subject.  She told me they'll start with Mice and they 1st have to get funding.  I said, "perhaps it won't take that long because it has to do with hair loss and there's a lot of money in that" she agreed and said "hopefully soon". 

SO! There's a glimmer of hope.

I told her about the chart. She just smiled and said "great", but when they start research I'll be SURE to give it to her no matter what!!

So she told me there's been a lot of success with Finasteride a drug used for the treatment of benign prostatic hyperplasia and male pattern baldness, and put me on 2..5 mg once a day. Sometimes insurance rejects paying for it, however, right now it costs It costs about $10 a bottle.  She also prescribed Clobetasol Serum!  I told her I was using the foam and lotion AND shampoo already and she said the serum worked better.  She said to use the lotion ONLY ont he area around my hair line because the skin there is way more sensitive then the rest of the scalp.

She also told me there's another medication that's used for ..... I JUST can't remember what, but that it works REALLY well, only it costs ... hold on to your hats.... $2 grand a month!!!

So, my thoughts are, though research will find us meds that insurance will pay for, there's a good chance, if you don;t have insurance it could turn out to be very costly.

She was excited to hear my hair follicles were still alive (per the biopsy) so I don't know what happens to people whose hair follicles are not alive.  :( 

OK so, the Vita A/Retinoid/Accutane connection.  I did speak to her about it.  I showed her that oddly, since I stopped using the Tretinoin cream every night (about 3 weeks ago) I have a bit of regrowth at my temples.  She agreed and expressed happiness about the regrowth. She also remarked about seeing how visible the FFA was to her and she was the 1st Dr to say to me, "Oh NO!  We don't want you to lose any of your beautiful hair!"  My eyes welled up because she was the 1st PERSON (besides my friend the hairdresser) who didn't try to make me "feel better" by telling me they didn't see "it" or that "worse things could happen".

She took the article I printed out that Lacaette posted and told me Vitamin A has been a cure for some and a hindrance for others, so it's not clear yet but there "might" be a correlation, something to explore when they start research. 

I told her Dr Jacowitz the acupuncturist told me to expect a week for every year of using the Tretinoin cream so for me almost 2 months from stopping to use it and Dr Bordone (Columbia Dr) said, she had not heard that but found it interesting and certainly possible....we shall see.  Though I started her treatment so, it might turn out to be that.  ORRRR I started getting Lymphatic Drainage Massages (2 as of today).  There's a lot of material out there saying LDM is exceptionally beneficial for auto immune diseases.

Let's hope for all of us they get funding by the end of 2015!!!

2016 has GOT to be a better year.

That's it.

Hope that was not boring and TMI.

OH also, I'm going to add yet another line in the Chart asking about other diagnoses regarding inflammation in your body.

best regards,

Dragon & Fox

Permalink Reply by sadandunsure on August 31, 2015 at 8:28pm

thanks for sharing, we need more updates. i'd love to hear from the duke group....

also, my derm told me the same about finasteride, so i'm taking it now. i also got confirmation from dr jeff donovan that there is increasing evidence of success with finasteride, also cheryl and jinzy on here both have had "scuccess" with it. hopefully it really does prove to have efficacy.

Permalink Reply by DragonandFox on August 31, 2015 at 10:06pm

sorry, I made lots of typos in this post. I hate you can't edit.  I wanted to say I used the tretinoin for 7 years so, if the acupuncturist is right, it should take 7 weeks for me to see regrowth.  Also, it will be difficult to know since I;m also on the new meds and getting the Lymphatic drainage massages.

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