New to the forum
Posted 05 July 2010 - 04:04 PM
Posted 05 July 2010 - 04:54 PM
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!
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Posted 06 July 2010 - 03:59 AM
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.
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Posted 06 July 2010 - 04:15 PM
Posted 07 July 2010 - 09:09 AM
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.
Posted 07 July 2010 - 12:11 PM
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.
Posted 07 July 2010 - 12:15 PM
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!
Posted 07 July 2010 - 12:18 PM
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,
Posted 07 July 2010 - 03:35 PM
Posted 07 July 2010 - 04:53 PM
Thanks for your reply on hair loss. I will send you an PM for the shampoo and treatment that helped you.
Posted 07 July 2010 - 05:08 PM