Hey! I have been on a similar trek but with different diseases. I was diagnosed with crohns disease in 2003 and MS in 2009.
I've been through IVIG treatments which were amazing when they worked. I went from being blind and unable to walk to the next day feeling normal again. Unfortunately that didn't last... but that's life.
I took immuran for 5 years for crohns disease as any other medication could cause my multiple sclerosis to flare up. I have tried several MS medications but finally had to go off all medications for MS and Crohns as the combination of the two could cause the JC virus and possibly kill me.
All of this is to say that I began a new medications called Aubagio. It was originally used for rheumatoid arthritis. I am using it to control both diseases and so far it's amazing. I am no longer in constant pain from my crohns and can eat almost everything again.
I am a guinea pig for my neurologist and my gastroenterologist but so far so good! Since autoimmune diseases are related maybe your doctor could look into it for you?
And about the prednisone stretch marks... they fade, mine are barely visible anymore!
Finally, contact the drug companies. I was able to get several of my medications for free until I got a job and health insurance. I had gilenya for MS completely paid for and had a small deductible to pay for Betaseron. It's worth a shot.
NoBedtimeForBanditos16 karma
Hey! I have been on a similar trek but with different diseases. I was diagnosed with crohns disease in 2003 and MS in 2009.
I've been through IVIG treatments which were amazing when they worked. I went from being blind and unable to walk to the next day feeling normal again. Unfortunately that didn't last... but that's life.
I took immuran for 5 years for crohns disease as any other medication could cause my multiple sclerosis to flare up. I have tried several MS medications but finally had to go off all medications for MS and Crohns as the combination of the two could cause the JC virus and possibly kill me.
All of this is to say that I began a new medications called Aubagio. It was originally used for rheumatoid arthritis. I am using it to control both diseases and so far it's amazing. I am no longer in constant pain from my crohns and can eat almost everything again.
I am a guinea pig for my neurologist and my gastroenterologist but so far so good! Since autoimmune diseases are related maybe your doctor could look into it for you?
And about the prednisone stretch marks... they fade, mine are barely visible anymore!
Finally, contact the drug companies. I was able to get several of my medications for free until I got a job and health insurance. I had gilenya for MS completely paid for and had a small deductible to pay for Betaseron. It's worth a shot.
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