Does anyone have knowledge about Relapsing Polychondritis?!


Question:

Does anyone have knowledge about Relapsing Polychondritis?

I was diagnosed with this over 3 years ago. I have grown very tired of the side effects of the medicine ( Methotrexate) and have decided to just let the disease play itself out. I guess I just want someone to say " yea that is a good option". I haven't said anything to anyone in my family yet. Just a note I am 44 years old.


Answers:

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!




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