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[Jack]

He is in Fresno, California, Jack.

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[elephant]

Hi Biohazard, You really need to see a Rhuematologist that sees at least 100 patients with Wegeners Granulamatosis. You are young and this may be so overwhelming for you because you were recently diagnosed. I was 12 years old when I started with the WG symptoms and did not have the right doctors, but miraculously made it...had kidney failure and ended up with a kidney transplant. So consider yourself the lucky one. Make sure you educate your self about this disease.

[Sangye]

i was reading about the amounts of meds most of u take and it seems mine are rediculously high, im on 120mg of pred 2x per day and 250mg of cytoxin,
-biohazard

Hi Biohazard, nice to meet you. The others have given you great advice. Are you sure about that pred dose? They don't base pred on weight. You couldn't be taking 240mg pred a day.

The most important thing for you is to get a Wegs specialist, as the other members have said.

[elephant]

I thought my Rhuemy said they usually start everyone with 60 mg of prednisone regardless of weight. But there are variables to that one too.

[pberggren1]

Ya, I must have missed that. 240mg of Pred a day is very high.

[Palmyra]

hi everyone,
im 16 years old and was jus diagnosed w/ WG june,13,2010- im about 6 weeks post op right now and recovering nicely, i dont know much about the disease and was hoping for some outside help, im 6'4" and 320lbs give or take(depending on swelling) i was reading about the amounts of meds most of u take and it seems mine are rediculously high, im on 120mg of pred 2x per day and 250mg of cytoxin, my doctor says that the pred is supposed to make me gain weight however in the last 30 days ive dropped 40 lbs, not sure why but im also on a rhenal diet, (limited on phosphorous, sodium, potassium, and sugar) but i can eat a meal and still be hungry, i also have semi-noticable steroid induced acne on my face and chest, any hints on how to clear it up would be nice, ill try to post back here from time to time but forums arent really my thing,
-biohazard

So Biohazard,
Bummer of a diagnosis, but very impressed you found your way here after such a short time. My daughter was diagnosed with Crohn's disease at the age of 14, and with Wegener's at the age of 20. She is now 24 and doing pretty darn well. You mentioned eating a meal and still being hungry..that is an all to common side effect of the prednisone, and the reason your doc said you would gain weight. If the Weg is still smoldering, and/or some of the other drugs (ie, cytoxin) can cause you to loose.

120 mg of pred TWICE a day? That sounds high to me on an outpatient basis....what do others think?

The 'renal' diet is to protect your kidneys. Certain types of foods (high protein, anything that is taxing on the kidneys,) and Weg itself can cause kidney damage. The acne is a tough one...drink plenty of water (no sodas, just good clear water) and don't stress your skin by over cleansing. You might ask your doc about any antibacterial topical preps that can help heal the skin lesions.

Sorry for you to be here, but you are very mature and bold...so good for you to ask questions. Knowledge is power with this disease. Good luck, and keep us posted re: your progress.

Mom Jane/Palmyra

[Doug]

Because you are big physically (not to mention young), others may assume you are able to do heavy lifting, for example. Be very careful about over-doing things just to please others or to keep them from getting on your case, and, if you don't feel well enough to do something physical, don't hesitate to let the other person know that you feel weak (impaired, unable) because of WG, and please understand you can aggrevate your condition by ignoring what your body tells you.

As one of many teenaged or people in their 20s on the forum, you might want to start a thread around such issues as dealing with physical limitations the WG or treatment puts on you and how others regard you since young people should be able to do anything. At my age (62), people expect me to be beat up and worn out! Ha! At your age, you may face predjudices us older weggies can't imagine. Just a thought.

[drz]

So Biohazard,


120 mg of pred TWICE a day? That sounds high to me on an outpatient basis....what do others think?



Mom Jane/Palmyra

On an in-patient basis most of us have had higher dosages, but they usually cut it way back when they discharge us to out patient or rehab facility. The high dosages are also usually limited to period where disease is very active with lots of bleeding or damage being done in the body.