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Kevla

Diffuse sclerosis

3 posts in this topic

Just been told it is now "diffuse sclerosis" and have been given one a day Penicillamine. Does anyone have experience of this?

 

If no improvement might have to go on methotrexate!

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Hello Kevla

 

Welcome to the forums!

 

I have never heard of penicillamin but found an article on our forum that states: "Until very recently, Penicillamine (aka Cuprimine, Depen, or d-penicillamine was commonly used for this purpose in Systemic Scleroderma, but in 1997, a large multi-center clinical trial in the U.S. proved that there was no difference between high-dose and low-dose Penicillamine in the treatment of Scleroderma." If it were me I would rather be on one of the more familiar immunosuppressants like azathioprine, methotrexate or mycophenolate but then that's just me, a non medical layperson! Maybe someone will chime in with experience of this drug.

 

What symptoms do you have and did it take you long to get a diagnosis?

 

If you're looking for any support please consider the Scleroderma Society local group for Essex, London & Kent, hosted by myself. You don't have to be a member of the Society to be part of the group or attend meetings.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Kevla,

 

Welcome to these forums!

 

Like Amanda, I've never heard of Penicillamine and would agree that there are better medications which can be used for Scleroderma. I'm actually allergic to penicillin anyway, so taking that particular medicine would not be an option for me.

 

We do recommend that if possible our members consult a Scleroderma expert; perhaps it might be possible for your general practitioner to refer you to The Royal Free Hospital at Hampstead, which is a centre of excellence for the treatment of Scleroderma.

 

Now that you've found our forums, please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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