13 posts in this topic

Hello All

 

Long time no post! Hope all are well and a big "Hey there!" to any newbies and there are quite a few! Hooray for you for finding the bestest place for people with scleroderma. What this community and site doesn't know about scleroderma you could write on the back of a postage stamp.

 

That's why I have come to ask my question about the ingredients AHA (alpha hydroxy acid also known as glycolic acid), BHA (beta hydroxy acid also known as salicylic acid) and retinol. I'm considering using a range of skincare that uses these ingredients and although I have looked into what each is supposed to do and how, I have no experience of them. As one of the claims is "believed they can prompt the growth of collagen and elastin", I had to come here and ask. I know that when it come to the realm of beauty products, fantasists have a field day, claiming anything and everything to sell a product but like many here, my body is a manic machine when it comes to the overproduction of collagen so I can't take any chances, even though scleroderma has never affected my face. Phew! 

 

Any advice, thoughts, ideas or experience?

 

That's all folks, have a FAB day and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

I use all of the above, and have for 30 years with no adverse reaction. Both my rheumatologist and dermatologist are on board with it, and state its perfectly fine. My two cents worth anyway. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Well hey there Sweet, sweetie pie! I hoped you would reply because I thought that you had a lot of experiential expertise in this realm (I associate you with luxury products) so I am gonna give it a go, sample size, firstly on my inner elbow for allergic reaction purposes, then a small patch of face and then smear!! Not really, I know a little goes a long way and too much retinol increases side effect potential, so they say.

 

I have always invested in quality makeup and hair products but used good not great skin care because I'd always been take for 10 years below my age. I did try the expensive stuff my make up brand sell on three separate occasions but saw no difference and my face dried out. I did continue with one product as it could be used as a primer but as I no longer applied make up 7 days a week I stopped using it 7 days a week. I kinda took my eye off the ball since being ill and what bad timing!

 

This will make people laugh I hope...I watch makeup videos on YouTube (we can say google so I assume that's okay) and didn't realise that I have large pores and eye bags until I saw what they look like! Not an aha! moment I particularly enjoyed or wanted! Oh well!

 

Take care one and all and thanks again Sweet.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

Great to hear from you again!!

 

I've never used any of the products you mention, so I'm really pleased that Sweet can give you some first hand information about them.

 

I've found a thread on Are retinol skin treatments safe for sclerodermians?, which I'm hoping might give you some more info.

 

Your skin always looks fabulous to me (much better than my wrinkles.....boo hoo!) so I can't really advise you from personal experience. :wink::happy:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hey there Josie-Jo...or just maybe your name...Jo! Why thank you on both counts and hope all is well with you guys.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda and all,

 

What an interesting subject to land on my screen first thing on Saturday morning.   Yes I know I am upside down from all of you but having an excuse to sit on my bed and do some sleuthing is just the ticket to keep me occupied for a hour or so.

 

I am very loathe to use any cosmetics at all on my face but there are one or two that I use simply to keep my skin moist enough to be comfortable.

 

My legs are the bits that give me the most trouble and I must moisturise them every day or they quickly become dry  and scaly.   For years I used a product which was funded by Pharmac - which is the organisation here which controls the medications we can get as of right or at a small fee.   All of a sudden the powers that be decided to change the brand, to something milder I think, which I didn't find as effective.    Here in NZ we have many many sheep!! which produce tonnes of wool and, as you know, that wool contains lanolin. which needs to be scoured out before the wool is useful in clothing and carpets.   So we have a large stockpile of very a useful product to turn into a 'cosmetic'.   That is what I have been using for the past year and in fact what my parents used when I was a child and growing up.   My brother imports it into Sweden of all places and his customers come back for more with wonderful stories of "miraculous" results on damaged and scarred skin.  

 

Amanda's post spurred me on to consult my little book of food additives and cosmetic ingredients to see what I could find.   Every product Amanda mentioned above was accompanied by a 'frown' or worse a 'scowl' so that would put me off for a start.   What a conundrum - who do you believe - the people who want you to buy and use their product or your own research and experience   My book gives one or two of the additives in the product I use a neutral face but no  'frowns' or 'scowls'.  

 

The lanolin is a bit heavy to use on my face but fine everywhere else and I buy a British product for my face.   It has more 'frowns' in its product list than the lanolin but is light and I use only an infinitesimal amount each day so feel that I am probably doing the best that I probably can.

 

Thanks for that diversion Amanda!!

 

Best of luck with your investigations

Judyt

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Hi Amanda,

 

What a fun topic you started! 

 

I just want to add, that no matter what you decide to use on your face, consider protecting your hands from it, because your hands are severely affected by scleroderma so the skin may react differently than on your inner elbow or face.  If you can't get protective gloves on, you could consider using some clear food wrap to shield your hand.

 

Good luck, and let us know how things go.

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hey Judy!

 

I'm not surprised AHA, BHA and retinol have frowns by them because they are very powerful ingredients, in fact 50% of people can't tolerate the side effects of retinol but I don't plan on being one. Thanks anyway.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hey Shelley

 

I hadn't even thought about protecting my hands, thank you and I sure will. I don't need to be making them any worse!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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A very interesting topic Amanda! I have extremely dry skin now (never used too) and like Judy it's worst on my legs. I've tried all sorts but nothing really works that well for me and I do need to be careful because I get awful itchy patches which can be about the size of my hand and then I get big black bruises.

While visiting NZ  last year I did try some lanolin for dry lip and it did help so maybe that will be worth trying for my legs, not sure where to get it from in the UK though.

 

Buttons

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Greetings and a quick update, have been using BHA @ 2% and no problems. Awaiting products, retinol @ 1% and AHA @ 10%, and will trial and let you know.

 

Thus far my skin (face) is much cleaner but despite 14 applications of various products, I'm yet to be amazed. I realise it's early days though and will have to decide whether or not to repurchase once I'm all out of everything. Sweet, if you're around, may I ask how long it took before you saw any effect from AHA/BHA/Retinol?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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