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splaty

Improving the appearance of Calcinosis?

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Hi, I've posted before about my extensive calcinosis on most of my body and joints. As any of you with calcinosis know, it's not only extremely painful but also unsightly and ugly. I have a very ugly patch just above my tailbone, and on my hips. I was wondering if anyone has had success in reducing the redness of these areas and making them less unsightly?

 

Anything anyone has done or suggests is appreciated. Just to update, I'm being treated for juvenile dermatomyositis (had it since I was 9, I'm now 18). I'm currently on methotrexate, and for my calcinosis I'm on a newer drug called Revlimid (lenalidomide) similar to thalidomide. I haven't seen any promising results yet but have only been on it for 3 months.

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Hi Splaty,

 

I hope there are others who can give some advice on the calcinosis redness. I will be keeping an eye on your post as I know a few people who would like some help with this problem.

 

I hope that your newer drug does kick in soon. It is test of patience when trying a new drug.

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Hi Splaty,

 

The Calcinosis must be really painful and unsightly; thankfully I've never suffered with it and I'm so sorry to hear that you're experiencing problems with it.

 

I've found a useful thread here about Calcinosis and some treatments recommended by a few of our members. I do hope the new medication you're taking will give you some relief.

 

I expect some other members will be able to give you more helpful tips and first hand advice.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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Hello Splaty

 

I am sorry you are struggling with this, I must admit it was one of the things I never wanted to have and don't. I have yet to hear of anyone with a successful treatment for calcinosis but who knows the medication you are on may prove to be it in which case you can share it with everyone as well as enjoy the benefits of it yourself!

 

Take care.


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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I am starting IV/IG treatments on Friday in the hopes it will improve my calcinosis. Will keep you all updated on the results.

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Splaty,

I understand the discomfort you are experiencing with calcinosis as I have it extensively on my lower buttocks right where I sit. However, I sense your question is what to do to make it appear less unsightly. Any 18 year old wants to look their best so this must be very distressing to you. A pimple is enought to make a teenager go into a frenzy! You don't say where you live but if it is where the weather is getting warmer and summer clothes are coming into the picture your concern for your appearance is probably even greater.

 

I don't have an answer as to how to make it look better while you to wait to see if the medication does anything to improve it. I am not a fashionista but there are probably styles of clothing that can comfortably cover or draw attention away from these areas. I feel for you, it is bad enough to have a chronic illness as a child, let alone one that affects the way you look.

 

miocean


ISN Artist

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