October 2th
2008
2:25 PM
Hi All,
I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be s no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!
-- By jovan | Reply | Private Message me
October 2th
2008
2:27 PM
Hi All,
I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be less than 215) and I was barely mobile, huge amounts of weight loss, alopecia, Raynaud's, etc. That was 11 years ago and I am now almost 100% better. Prednisone saved my life, but the side-effects were TERRIBLE! Especially for a girl going through puberty. Kids at school don't understand you're sick, and they can be extremely cruel. Luckily for me a large number of my family members are in the medical profession all over the world and my parents were able to pool knowledge to find the best treatment for me without all the horrible side effects. An uncle in Germany suggested I take a Prednisone alternative widely available in Europe called Diflazacort. This medicine is not available in the states apparently because the FDA thought it was exactly like Prednisone so was unnecessary. I'm sure this is some pharmaceutical company lobbying to preserve Prednisone's monopoly on inflammatory diseases, but regardless it makes finding Diflazacort difficult for Americans. This is a HUGE shame since this medicine gave me ALL of the benefits of Prednisone with NONE of the side effects. My mood swings, water retention, increased appetite, hazy brain, thinning skin, etc etc etc ALL stopped with Diflazacort. This wasn't only true for me either. A family friend had been diagnosed with Crohn's at the time and he was put on Diflazacort from the beginning of his treatment after seeing how I reacted to it and NEVER had any of the negative side effects I had to deal with. Really this drug was like a miracle for me. Prednisone prevented my sure death, but Diflazacort gave me my life back in its entirety. I've now been off of any steroid for 7 years and my muscles are fully back to normal. Some of the fat deposits Predinose caused still linger, but to most people's eyes I'm totally back to normal. I wish I could find everyone having problems with Prednisone side-effects and tell them about Diflazacort. Even though it isn't available in the states (although I heard recently they are trying to get it approved again since a number of studies showed Diflazacort is much more effective treating Crohn's than Prednisone is) you can get it on the internet or if you have doctor friends abroad as I did. I'm always wary of buying drugs over the internet since there's no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!
-- By jovan | Reply | Private Message me