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sis

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I am new to this forum and new to scleroderma. About 10 months ago, I was diagnosed with diffuse scleroderma and it has been a roller coaster ride ever since. I started with the tightness of the skin, the itching, the discoloration of the skin, the hair loss and now back to the itching. Can anyone help me, I need advice on what to use or take to stop the itching and the hair loss. This is driving me crazy. When I take a bath, I start to itch. Any type of wet or dampness will make me itch.

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Hi Sis,

 

Welcome to the Forum! I'm sorry you were diagnosed with diffuse scleroderma, but glad you found your way here.

 

Are you seeing a rheumatologist (preferably a scleroderma expert)? That would be the best person to ask for some help with the itching and hair loss. There are some medications that can help and he might want to make certain that there is nothing else causing either the itching or the hair loss.

 

I think most of us have been through the itching and many have had hair loss. What is usually recommended for the itching especially if it is associated with dry skin is to not overdo the bathing, watch the water temperature, use either a very mild soap or an oil-based cleanser, and moisturize as soon as you have toweled off, while your skin is still damp. I will often slather on some more 'goop' several times a day. It seems to help some. With the hair loss, it seems to be a temporary thing for a lot of people. It does pay to treat your hair extra gently though - mild shampoos, no tight ponytails - you get the idea.

 

I'm sure lots of other people will chime in with what works for them and will also welcome you!

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Sis

 

Welcome to the forums! Itching was one of my first symptoms and it drove me crazy! You are best placed to see a scleroderma expert as they know all the best medications.

 

I was prescribed antihistamines, low dose steroid (see this warning about steroids with scleroderma) a steroid cream and various moisturisers, the combination worked. You have to keep on top of it and forgo the washing if it helps, I did. Yep I admit to a lack of cleanliness during my first year because I was ever careful of doing anything to make the itch worse. I also gave up on clothes and spent most of my time in my dressing gown, of course I wasn't working so could do this. Now the itching has mostly subsided thankfully, I'm into my 3rd year.

 

I can't help with the hair loss as I didn't have this issue but I know others here did and I believe that it does come back.

 

Take care and keep posting.


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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Thank for welcoming me to this forum. I am seeing an sclerderma expert and was prescribed medication for the itching but it seem to make me sleepy and very little help with the itching. I have a lot of hair loss and was told that it will not come back. Just wondering if anyone else have the same problem. Thank for your recommedation on the itching.

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Hello Sis

 

Nice to meet you...and you definitely have come to the right place for good answers to your questions...somebody here is always in the know with good advice and moral support.


Sending good wishes your way!

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Sis,

Itching seems to be an issue that affects most of us, especially in the early stages. I tried so many different things for it both topical and internal and nothing really helped. Part of my problem is I was taking long, hot baths. Over the 6 years I have had the disease the itching has gone away. I don't take hot baths anymore and my skin has softened which I think has helped. In the beginning my hair fell out, too, but it has grown back. I am now on Prograf which cause hair loss and my brush is full of hair again but it doesn't seem to look thinner. My hairdresser said I have baby fine growth in the back which to her meant hair loss. Wishing you the best.

 

miocean


ISN Artist

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Hi Sis, and welcome!

 

So very glad you've joined us. I'm sorry to hear about your diagnosis. And oh boy, do I know what the itching is like. My comes in spurts, I've learned not to shower everyday, not have the water very hot, make it a short shower, and gob on tons of thick lotion. I also at times have to take an antihistamine to help relieve it. I hope you can get some relief! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sis,

 

I was prescribed a light, paraffin based bath oil and a cleanser/moisturiser for afterwards, it worked a treat for me.

 

Are you in the UK? If so look for my profile and send me a personal message and I'll let you know what my doctor prescribed its ace! I'm now very comfy! I know we have to remember its different strokes for different folks, it may work for me but not for you. It's worth a try though!! So sorry you're suffering. I can sympathise, its rotten.

 

Take care and warm hugs,

Lynn :emoticon-hug:

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Hi, Sis - I've never had the itching, but I certainly had the hair loss! I found that using a speical shampoo and scalp treatment helped with the hair loss. It slowed the loss at first and then seemed to encourage re-growth. You can send me a PM if you want the brand name. Good luck - I hated losing my hair! <_<


Sharon T.

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Hi Sharon

 

Thanks for your reply on hair loss. I will send you an PM for the shampoo and treatment that helped you.

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Thanks for everyone responds. It is nice to know that people on this forum is willing to help and give advice. I am glad I found out about the website.

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