Diagnosed Yesterday

[Michael Dean]

I was diagnosed with WG yesterday.
I live in Southern California.
I'm on predizone right now and will start Cytoxan as soon as the insurance approves it.

I'm 54 yrs old, it started with moving joint pain, side aches and rash type bumps on my lower legs.

Michael Dean

My Niece found an interesting article from a mold website- www.mold-survivor.com/Wegener's%20Granulomatosis.html (http://www.mold-survivor.com/Wegener's%20Granulomatosis.html)
It says there have been a lot of these cases in So Cal, I don't know how old the letter is (2001)?

[Beth Ann]

Hello,

My mother was just diagnosed on thursday, she is 50 and we live in pennsylvania. If you don't mind me asking, what dosages are you currently on? Ive heard a lot of things about patients being over medicated and I wanted to compare my mom with someone in the same boat right now.

[Sangye]

Hi Michael, welcome to the group! I think you might hold the record for fastest person to join the group after diagnosis! LOL

It'll really help you to be in this group right from the start. Lots of support and great info here. What type of involvement do you have right now-- lung, kidney, etc... You won't have any trouble getting cytoxan approved-- it's inexpensive and has been used to treat Wegs for decades.

[Gator]

Hey Michael, welcome. How long do you think you will have to wait on the cytoxins? My Dr wanted me on it right away. I actually started them one day before being diagnosed (we all knew I had WG) and just 2 days after my surgical lung biopsy. I had bad insurance on top of that...


Hello,

My mother was just diagnosed on thursday, she is 50 and we live in pennsylvania. If you don't mind me asking, what dosages are you currently on? Ive heard a lot of things about patients being over medicated and I wanted to compare my mom with someone in the same boat right now.
Beth, I think they do cytoxin dosages by your weight, correct me if I'm wrong anyone.

[Jack]

There are a great many factors that go into calculating the initial dosage so it would be wrong to try to copy someone else's experience. If you are in particularly bad shape, it is not unknown to start at 1g of Prednisolone, although 60 mg is more usual.

[Michael Dean]

Hi Beth Ann,
Sorry about your mother.
I'm currently on:
60mg Prednisone
5mg Lisinopril- (blood Pressure) My blood pressure is low to normal, but the doc says it helps the kidneys
20 mg Omeprazole- for stomach
What is she on?
Then I have 2 others- Ondansetron (8mg) & Cyclobenzaprine (10mg)- one is for muscle pain and one for sickness when the I start the crytoxan
I'm also on some vitamins- Citracal and vitamin D3

[Michael Dean]

Hi Sangye,
Thanks for the welcome.
My lungs seem fine but my kidneys are definately affected.

[Michael Dean]

Hi Gator,
I was diagnosed Friday afternoon. We tried get it approved right then but was after 5pm.
The Rheumatologist precribed it "urgent", I do have good insurance so am assumeing it will approved quickly.

[NicShaf]

Hi Michael, welcome to the group. I'm also in So Cal, Orange County area. Glad to hear you're starting treatment so quickly. This forum will be very helpful,especially in the beginning. I was diagnosed in December and everyone here was really helpful and supportive.
Is your kidney involvement what got you diagnosed with WG?
That letter is interesting, I wish it had more info about where in So Cal they suspect these WG catalysts are coming from. I have some theories about where my WG came from, it would be nice to see if i'm correct or not:)

[pberggren1]

Cytoxan costs me 66 a month Canadian at 125mg per day with no drug plan.

[Terri]

[QUOTE=Beth Ann;38003]Hello,

My mother was just diagnosed on thursday, she is 50 and we live in pennsylvania.

What part of Pa? I"m from Southwestern part of the state.
I wish your mom well. You've come to the right place for questions. Someone out there will help you.

[Beth Ann]

Thanks for the well wishes!..We're still in shock but she should be coming home soon and we're heading into this full throttle. My mom had very little initial symptoms some sinus issues but they were tolerable and no pain at all. Im almost relieved that there was kidney involvement because it sounds like most individuals go undiagnosed for a while just hoping now that they pop back up and recover! Were from Northeastern and we're planning on traveling to JH to get a specialist involved. Our doctors here seem to be on the right track but we don't want to take any chances. Hope all is well for you!