Are there any safe medicines that slow the progression down?
Posted 15 April 2008 - 09:27 AM
Posted 15 April 2008 - 11:55 AM
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!
Posted 15 April 2008 - 12:15 PM
Posted 15 April 2008 - 12:36 PM
It's really helped me!
Posted 15 April 2008 - 12:41 PM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 15 April 2008 - 12:43 PM
Posted 15 April 2008 - 01:00 PM
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.
Posted 15 April 2008 - 03:19 PM
Posted 16 April 2008 - 01:22 AM
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.
Posted 16 April 2008 - 03:45 AM
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.
Posted 16 April 2008 - 06:58 AM
Yes in my opinion I do think it will help. In a couple of months you should notice a pretty big difference with fatigue and pain. My thought is it's never too late!
Posted 16 April 2008 - 01:51 PM
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.
Posted 17 April 2008 - 01:46 AM
That is great news that it worked fast for him.
Posted 17 April 2008 - 06:15 AM
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..........