Replies to This Discussion

Permalink Reply by Miss Mymble on July 23, 2019 at 5:58am

Thank you so much for the info Geri. And congrats on positive progress! So good to hear. And wow, you’re so lucky to have a derm who actually advocate for you. What a blessing!! :)

What  kind of phototherapy are you getting? If you have more info on it pls let us know. 

 

And thanks for the info about what ingredients to avoid. Though I think it will be difficult to find some products without all of those.. maybe not. Please let us know if you succeed in finding some. Always great with suggestions. 

Do you happen to know why they recommend us to avoid those specific ingredients? Is it due to some findings in their research or maybe just a qualified guess or..? 

Anyway thank you. I will def check my products and see what substitutes I can make. Oh and another question, does it also imply to bodylotion etc or is it only facial/hair products? 

Permalink Reply by Miss Mymble on July 23, 2019 at 8:16am

To answer my own question about suggestions for products. 

It looks like the brand Green People and their line Neutral will be safe to use; facial moisturizer, shampoo and deodorant etc. I have used some of their other lines and liked them. So I will give the Neutral a try. 

Permalink Reply by mc on July 25, 2019 at 1:51pm

Thank you for sharing this!  I too have been seeing a doctor at MGH for FFA.  I saw her a few weeks ago and she said I'm probably in remission.  I'm going to keep using the Tacrolimus every so often just to be on the safe side.

I did some patch testing but don't know if I'm actually in the "study" there.  I wonder if it's the same Dr.s.  Keep sharing your progress!

All the best!  Christine

Permalink Reply by Miss Mymble on July 26, 2019 at 3:03am

Im confused. Blue Lizard sensitive contain Titanium Dioxide. As I understood that’s an ingredient to stay away from?! Wonder why they recommend it or if the “guideline” has changed. Oh it’s sooo confusing...

Permalink Reply by Toby on July 27, 2019 at 7:25am

Geri,  Thank you so much for sharing the list of chemicals to avoid. I will check all my products to see if they contain any of these chemicals.  Seems Ike the doctors are thinking FFA is caused by some chemical, just difficult to determine exactly which one. I am more than willing to eliminate suspicious chemicals in hope of not having any more hair loss. THANKS again for sharing the list Geri!

Permalink Reply by Toby on July 27, 2019 at 9:38am

Limonene and linalool is in my kitchen hand soap. Something awfully close to methylcloroisothiazolinone is in my dishwashing lotion. I did switch to chemically safe shampoos, body soaps, and make up some time ago. Still need to check makeup. Thanks again for sharing.

Permalink Reply by Toby on July 27, 2019 at 2:05pm

I just went shopping and took this list of chemicals and looked at all my old favorite brands that I used to use daily before I was diagnosed with FFA. I used these products daily for years. Here is what I found.

Methylcloroisothiazolinone - 26 letters in this word. I found that this chemical is in the Oil of Olay body was that I used daily to shower. I washed my hair daily or every other day with Pantene Shampoo for color treated hair which contains Methylclorisothiazolinone. I used Pantene Conditioner for color treated hair which is another application of Methylclorisothiazolinone. Then since I live in a hot sunny climate I put on Neutrogenia sunscreen with SPF of 100 that is another application of Methylcloroisothiazolinone. So that is 4 times in my daily morning routine for decades that I was applying this chemical.

how that makes me feel.........

Permalink Reply by Diart on July 29, 2019 at 11:11am

Hi Geri

Thank you for posting this. I have been getting rid of lots of products that were commercial and going with simple ingredients for a couple years. It is very helpful to have this list. I sent it to my dermatologist. I also asked her about the phototherapy treatments. No response yet. My hair loss continues very gradually even taking Finesteride daily. My dermatologist is sure it is working and I would be worse without it. No side effects that I know of. Keep us posted on your progress. At least I have a derm that cares but I'm 2-3 hours from cities that have more resources. Best wishes, Diane

Permalink Reply by Diart on August 5, 2019 at 10:52am

My dermatologist responded. She said they have not considered adding phototherapy due to the number of treatments needed close together and the distances her clients have to travel. (We live in the middle of the mountains of Colorado & nothing is close.) She suggested a hand held version to use at home and recommended Daavlin products due to their home protocols. I found them listed on line and a $1,200 unit marked down to $950. A prescription is needed for home delivery. Amazon has hand held phototherapy units for $299 that have great reviews. No brand name listed and I'm not sure about the protocols. No mention of a prescription required...I've asked about protocols of the buyers on Amazon. 

Permalink Reply by Donna on August 7, 2019 at 9:19pm

I thought I was doing good washing my hair with baby shampoo this morning.  Seemed like a lot of hair loss afterwards!!   I also checked Green People shampoo online,  that’s so expensive.  I think it was $24.00 for 6.7oz.

Permalink Reply by Toby on August 16, 2019 at 7:16am

I showed the list of Massachusetts General Hospital to my dermatologist. She said Methylchloroisothiazolone is in a lot of products. The FDA, Canada and Europe have set a limit on how much can be in a product. It was in my body wash, shampoo, conditioner, sunscreen and dishwashing lotion. I bet all those products together exceeds the limit. My dermatologist said this chemical is used in baby products. People like us try to limit chemicals to do the right thing and don’t realize this nasty chemical is in baby products.

anyone find any nice products withOUT these chemicals?

Permalink Reply by sampeckard on June 7, 2021 at 3:12am

Thank you for sharing this! Very glad that you're doing better now! I also want to share some ingredients that you should watch out for in nail polish. The list includes formaldehyde, toluene dibutyl phthalate. You should also try to avoid camphor. Even though it was confirmed that it is not carcinogenic or mutagenic in bacteria, it comes with health concerns for sure. Please do check the ingredients list before getting a product, and choose your product wisely! There are so many natural products found in the marketplace nowadays, and if you want your nail polish to last longeror wash your hair with a chemical-free shampoo, please look for organic products in organic stores.

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