Answer:
I also have what you have. In fact, I nearly lost my right eye 3 years ago to this nasty, unfair disease! But all's not lost...Try fish oil
capsules, green tea every day, avoid cigarette smoke, and as far as
medication:
Have you asked your rheumatologist about
Immuran (azathioprine)? You cannot quit taking ANY medicine cold turkey---but immuran is much easier than
methotrexate---and you can even have a cocktail every now and then! It does take about 3-4 weeks of initial dosing to keep the disease at bay. It is truly a much preferred method of treatment to methotrexate. Please ask your doctor.
If you are in severe pain, of course, you must deal with using prednisone---but if you can get away from it-DO SO! It will not only make you gain weight, but it causes depression, anger, nightmare- quality- of- life.
You did not say where/how your RPC is striking you. For me, I was diagnosed 3 years ago, but I've had issues for about 13 years. If you can keep the disease out of your chest, thorax, heart--you're okay.
As far as that vegan diet, I showed the same stuff to my (multiple) physicians at Cleveland Clinic, and they said BUNK! I would avoid heavy fats, and excessive sugar, but darlin'---here's the truth---you and I have something that there isn't a lot of money in fixing as far as the pharmaceutical
companies go. The best thing you can do is common sense stuff...sleep right, exercise,
keep too much weight from piling on (to help your joints and cartilage issues), drink LOTS of water, and take an antidepressant if you think this is getting to you. If you are unhappy, you will probably get sick again. I am so glad I started taking a small dose of
wellbutrin. RPC is lonely, scary, and can be quite painful. I wish you well. Good Luck!
http://www.relapsingpolychondritis.com/...
Here is a story about a woman who got hers under control using a vegan diet. She specifically names the book "The McDougall Program," by John McDougall, M.D. From another website I pulled up this:
"Many patients are helped by a healthy lifestyle of proper nutrition and exercise. The nutrition that is vegetarian appears to be more beneficial and if that does not help try a vegan diet." Also ask your doctor if there are any alternative treatments that may help. If he is not helpful, find another doctor. I read over the list of side effects, so I understand your wanting to go off the drug. I don't know if the vegan diet or alternative treatments will help, but I wish you the best of luck. I know what it is like to be on a medicine that is almost as bad as the disease.
Channa