new to WG

[biohazardbaldy]

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, if u have any questions or answers for me plz post back under this thread or send me a pm.
any help appreciated
-biohazard

[Jack]

Hi Bio, sorry you had to come to find us. This is going to be the beginning of a long journey for you.

What operation have you had and what were the symptoms that led to a diagnosis of Wegener's?
Is 320 lbs your usual weight? If so, you may well be losing weight due to the renal diet. I certainly found eating to be quite difficult at times on this diet.

[biohazardbaldy]

i had a biopsy taken of my throat and also had some operation they only explained to me as roto-rootering my nasal cavities( for the lesions in my nose), the symptoms started in erly february and my normal pysician just kept saying it was sinus infections, than when my nose started gushing blood almost a pint at a time my mom rushed me to the ER, before the hospital i was 360lbs and couldnt seem to drop any no matter what i did, the doctor diagnosed me with WG, vasculitis and kidney failure, i guess i got pretty lucky because my kidneys are repairsing quickly and the doctor said rhenal diet for about another few weeks or until he sees consistent bloodwork, anything else i can help with i will, i dont remember much about the hospital because i was on 1600mg of fentanyl per hour with PCA every 10 minutes-any info i can find ill give tho thanks alot

-biohazard

[pberggren1]

Hi there Bio,

Welcome to the Forum.

Your dose of Pred and Cytoxan sound right to me. They dose it based on your weight. I am about half of your weight and took about half of the dose you are taking for those meds.

Pred will definitely increase your appetite but you can control that with will power. Eating less salt and no sugar and no processed foods is a must with Wegs.

Where abouts do you live Bio? Are you in the US?

Were you diagnosed quickly? What were your onset symptoms? Do you have a Wegs specialist? One that is recommended by the VF? It is very important to have a Wegs specialist directing your care.

[biohazardbaldy]

ya, i live in CA-USA and my specialist is in fresno- DR. dowain wright, not sure what the VF is but he seems to know what hes doing pretty good, after all he did save my life- and like i posted above the symptoms were mostly just what i thot was a bad sinus infection that wouldnt go away

-Biohazard

[pberggren1]

VF stands for Vasculitis Foundation. You can go to their website: www.vasculitisfoundation.org

[biohazardbaldy]

k ill look him up thanks

[Jack]

Glad to hear that your kidneys are recovering. You don't say where you are located, but the next job has to be to make sure the specialist who is treating you knows Wegener's inside and out. It is so important to have this expertise because the disease does not follow a book of rules and the success of treatment will depend on the knowledge of the doctor in charge. The wrong treatment could seriously damage you!

The good news is that with the right treatment, you could gain remission and live a normal life.

[pberggren1]

Do you have to irrigate your nose and sinuses with a nasal wash or rinse?

I have been using a WaterPik to irrigate my nose the last 6 or so years. It works very well and I highly recommed it if you have a lot of mucus and crusting and/or bleeding.

I also have North America long distace bundle on my phones so if you want me to call you or you want to call me here are my numbers: Home: 306-971-7086 Cell: 306-774-5801.

I would be more than happy to keep in contact with you to help you in any way that I can. Wegs is a scary prospect. I was diagnosed when I was 26. I am 34 now.

[pberggren1]

He is in Fresno, California, Jack.