Guest Sadie

Are there any safe medicines that slow the progression down?

14 posts in this topic

I've been wondering if there are any safe new medicines out that slow down the progression of the Scleroderma? I haven't been on anything to slow it down since the first couple years of my Scleroderma when it was progressing fast. For awhile it stablized then the last few years it has been progressing but not as fast as it did at first. The only thing is that I don't want to do more harm but if theres something out thats safe I would be ready to try it! I will be seeing my rheumatologist next month.

Sadie

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Hey Sadie ~

 

I know the feeling of having need to find something that is a cure all. The best med I found was bosentan. It appears to have slowed down the progression of lung fibrosis, reduced my PAH and most importantly, took away most of the constant pain in my fingers.

 

You didn't mention where or how Sclero affects you so I'm not sure if Bosentan may be your answer. However, it was my rheumatologist that started this process, so talk to him. I use my rheumatologist as my quarterback.

 

I know it's frustating . . . but you've got to keep fighting for relief somewhere.

 

Good luck, and keep smiling . . . it's good exercise for your mouth!


John L

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John, I have digestive tract, lung,heart,small blood vessel, thyroid, raynauds, joint and muscle problems and skin is pretty tight.

sadie

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I wouldn't say there is anything that is totally risk free, but have you talked with your doctor about Plaquenil? It is supposed to help with fatigue, pain and slow or even stop the progression if caught early.

 

It's really helped me!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Some have had good results with Cellcept or Imuran.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Sweet, No, I haven't talked about Plaquenil with the dr but I am going to ask him. Do you think it would help since I've had Scleroderma for 18 years or is it only used in the early years of the Scleroderma? I was on Depenillnime (spell?) the first couple years of my Scleroderma.

 

Sadie

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Hi Sadie,

 

Safe is a relative term and varies from person to person. I was on Cellcept for almost two years and I had issues with low RBC/WBC, high liver enzymes, and fatigue. Make sure to go through required tests to monitor functions of vital organs such as kidney or liver.


Kind regards,

 

Kamlesh

 

 

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Last summer my doctor put me on Methotrexate. Is this a good drug for slowing down the scleroderma? That's what they told me it would do?

Deb

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Hi Sadie,

 

Hope your toe is healing up really well.

I would definitely ask about the Plaquenil to see if that may help. I just started 2 days ago so it's way too early to report if it's working or not but from what I understand it's supposed to slow down the disease process.

 

Karen

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Hi Sadie,

 

I have Scleroderma for more than twenty five years. I just want to tell you that D-Penicillamine has helped tremendously with skin problems at the beginning of my diagnoses. For the past seven years I was put on Plaquenil, and really have helped me with fatigue and weakness. But first you have talk to your doctor and ask him what he thinks.

 

Hanging there

 

 

 

Alice

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Hi Sadie ,

 

I have to say that we noticed positive results from the Plaquenil within the first month. By the end of Aug (3 months of use), Gareth said that his 'food tube' was working again. It did help tremendously with the fatigue, too. He has had no side effects from it, either.

 

Take care, Everyone.

Margaret

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Margaret,

 

That is great news that it worked fast for him.

 

Karen

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I was orginally put on IMURAN for my Autoimmune Hepatitis, and my rheumatologist says let's just stick with that for now..........I know it's keeping my liver under control by the constant blood work that is done, but can't say I actually feel better SD wise, I don't have Lung Involvement, or Kidney or Heart, so maybe it is keeping that at bay...

 

 

When I first started Imuran, I did a great deal of research, and yes, down the road it can cause other problems, but if I didn't take it, I was going to eventually need a liver transplant, so I live in the present, and try not to worry about the future - will cross that bridge, when and if I come to it..........

 

Take Care......

Donna

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