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Arnesia15

Newly diagnosed with scleroderma

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I was just recently diagnosed with scleroderma and I was hoping to get advice and any suggestions there may be to help me get through this. Also I would like to know what medications were prescribed and seem to work best and has anyone ever had IVIG infusion? 

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Treatment is mainly symptom led, so we would need to know what these are before any of us are able to make any meaningful comment.

 

I do hope that your symptoms are not too bad though.

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Hi Arnesia,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with scleroderma. I can understand that this is a worrying time for you and I've included a link to our medical page on What is Scleroderma? which will give you comprehensive details about the disease and also include links to our other pages, which I hope you'll find helpful and informative. We do have a medical page on mainstream medications, but as scleroderma is such a diverse disease, it's impossible to advise you about which treatments would be suitable for you. We therefore always recommend that our members consult a listed scleroderma expert, as this complex disease requires specialist knowledge and expertise, in order that the correct treatments can be given.

 

We do have members who've had Intravenous Immunoglobulin (IVIg) infusions with quite successful results and I'm sure they'll be along to give you some first hand information and advice about this.

 

As well as the above suggestions I would also say that having a positive attitude goes a long way towards coping with this disease and now that you found our forums and joined our community, you'll find lots of advice and support from our members.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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