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Welcome to the site Gator. I'm also 27yr old, diagnosed with WG in December2010. It sounds like you have a more mild case of WG, not too dissimilar from my own case. I'm still on CTX, Preds and bactrim, but doing pretty well considering everything. It's great to hear you're off CTX & Preds so soon, and it sounds like you're doing good. Keep up the good work
Nicole
Gator, thanks for sharing your story. How much Bactrim do you take? Do you take Bactrim daily?
NicShaf - Thank you. Very kind of you. Let me know if you have any questions. Are you getting the cramps (real bad with the jaw, calves, ect) or headaches? How much prednisone are you on and are you decreasing it? How did you figure out you had WG? It felt great to get off those meds. The burning bladder and urethra alone made me anticipate it a lot, even effecting sleep since you always feel you have to go. Good luck and stay healthy.
I made some changes. Went from a chicken meals and junk food diet to a chicken meals, junk food, OJ, V-8 juice, V-8 fussion, and B vitamins diet. I did 1000mg calcium pills for a while but now stick with icecream and chocolate milk, OJ w/ Ca++, and so on. I was afraid of kidney stones. On second thought, maybe I'm not the best to talk to. Haha. But I'll make changes soon here to be more healthy.
Gator I hate to tell you but V-8 juice is junk food.
There's no way you can get enough calcium from ice cream and milk. If eating dairy were sufficient, then Americans wouldn't have so much osteoporosis. Take a good calcium supplement and make sure your docs are testing your vitamin D levels, too.
Welcome Gator. You've come to the right place for advice and support. These people are all wonderful.
I don't have lung involvement myself, but I do have shortness of breath occasionally, and I tend to get bad coughs. Smoking with your lung involvement really scares me. You mentioned, that earlier on you could not afford the cost of ingesting. Has that changed? Are you able to ingest more than smoke now?
Congrats on kicking the dip habit!!
I get some leg cramps, but if I go for a walk daily and stretch, they feel better. Occasional headaches. I'm currently on 30mg Preds daily, I've been working down from 60mg since January. I had cold like symptoms of a cold since Sept2010, and by December they admitted me into the hospital with pneumonia/ cavitary lesions in my lung. My Pulmonary doctor diagnosed me while I was in the hospital for about 4-5 days. I'm hoping to be off Ctx around June. They tell me my age is on my side for recovery and remission, it sounds like you're on the right track, it's encouraging to hear
Nicole
hey i understand..im 26 got the wegners..mostly sinuses and eye involvement but sinus rinse helps alot if used everyday.im at 25mg of pred..and still at 175mg of cytoxan.and down too one eye drop a day...but im hoping too be off the pred soo..i still havent gotten sick on meds..its like a maricle cuz i work front end cashier at walmart..lol on one eye..wegs took my right eye before i got diagnosed..but im just lucky the meds are working..just scared anytime my other eye gets red cuz i dont want to loose that one too..
I took your calcium comment to heart and took a 500mg pill for the 1st time in months. I do worry about kidney stones though. As for milk, OJ, ect, it is 200-500mg Ca++ per one of my sevings so I get a fair amount but not really in the 1200mg or more a day category.
But the V-8 part, It's all relative. I don't know your diet, but mine has no fruit and about a 1/2 serving vegetables and the V-8 really helps fill in the gaps. -I'm quite certain it isn't junk food to me. Now, my 1-2 coca colas a day, I'll give you that.
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