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 (http://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.

[Jack]

He is in Fresno, California, Jack.
Add it to your Profile Bio - at the top of the page select Forum Actions - Edit Profile.

[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.