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Mum with scleroderma, whats the best course of action?


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#1 logan

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Posted 18 August 2015 - 05:23 AM

My Mum has been dealing with this all her life. Originally she thought she had Lupus, as one of her Aunts has this.

 

The disease seems to have accelerated it's attack in the last 3-4 years. She is now having trouble swallowing, as she has had to have vitamin B injections for about 2 years and special shakes instead of food.

 

On the plus side, if there is one, it seems to be leaving her other organs alone at the moment.

 

Apart from the shakes and vitamin B the doctors don't seem to be giving her anything else. My Dad seems to think immune suppressants would not be a good idea. but after reading an article on the John Hopkins site about Dr. Frederick Wigley I wonder if this isn't a potential way to reverse some of the damage.



#2 Shelley Ensz

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Posted 18 August 2015 - 07:45 PM

Hi Logan,

Welcome to Sclero Forums. I'm sorry your mom has scleroderma and send my best wishes to all of you.

The way to determine the best treatment, if any, is to have her consult a listed scleroderma expert. Not everyone is a good candidate for immune suppression, because it increases susceptibility to infection. But it does sound like your mom could benefit from seeing an expert so I hope you encourage her to do so!
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 18 August 2015 - 10:37 PM

Hi Logan,

 

Welcome to these forums!

 

I'm sorry to hear that your mother is suffering with Scleroderma. Immunosuppressants are often prescribed for Scleroderma (I take Azathioprine myself) but as Shelley has advised, your mother would benefit from consulting a Scleroderma specialist, who would then be able to determine the best line of treatment for her.

 

Kind regards,


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#4 Margaret

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Posted 22 August 2015 - 12:50 AM

Hi Logan,

 

Welcome to the forums. I just want to add that there are other meds that can help with scleroderma symptoms. My son was put on Plaquenil, an anti-malaria drug, that *jump starts your immune system*. It would seem like that is the last thing you would want with scleroderma, but it works on lessening symptoms. Gareth also had internal involvement and his esophagus was hardened for two-thirds of the way down. The plaquenil loosened up the hardness and slowed his progression; sorry, it's the best way I can explain it. He can't take the suppressant medications because he already has Mannose-binding lectin (MBL) and IGg deficiencies, requiring IVIg infusions monthly. He's been taking plaquenil for seven years now.

Take care, Everyone.

Margaret
Mom to Gareth, 27 years old, DS/ASD