Hello

[Robert]

Hello everyone. I've been browsing around the forum for a week or so now and figured I should introduce myself. I was recently diagnosed with wegeners and have been trying to get all the information I could. My symptoms started back in February with severe chest pains. I kinda played them off as I had started a new job and thought I may have just overworked myself. But they never went away. They lasted about a month and a half. Then I started getting sinus congestion and was having shortness of breath quite often. It wasn't til I coughed up blood a couple times that I became worried that something was really wrong. Went to the er and was told I had a slight case of bronchitis and was given antibiotics. Of course that didn't help at all. Then I started having the body aches. It hurt so bad to even move around. Every part of my body was hurting. After a couple of weeks of that I decided it was time to go back to the hospital. Something definitely wasn't right. This time they ran a lot of tests and did a CT scan. Something in my blood work came back that they were concerned about and the ct showed some lesions in my lungs. They admitted me to the hospital after that. Spent a week there. While in there they did a lung biopsy. Everything came back positive for Wegeners. They started me on prednisone 60mg. Been on that for about two weeks now. Went to my follow up with my rhuematoligust? on monday. She recommended starting me on the iv cytoxan. Now I'm just hanging out waiting on my appointment to start my treatment.

[Sangye]

Hi Robert, welcome to the group! Where are you located? It's very important to get a Wegs specialist overseeing your care. Here's a thread with info for you: What the Newly-Diagnosed Need to Know

It's odd that your doc would put you on IV cytoxan because it's not as effective as oral cytoxan. It's also very hard to control if you have a problem with it. This is another reason to get a Wegs specialist involved.

[Robert]

I am in the Dallas/Fort Worth in Texas. When I was in the hospital the doctors there were talking about the oral cytoxan. That's what I thought I was going to be put on. But monday my rhuemy said she felt the iv was a better option for me. She said it was due to my job being outdoors in the heat. She said with the oral cytoxan you have to drink lots of fluids to counter act the damage that it may cause. She was concerned about me becoming too dehydrated and having more issues

[Chris G]

Welcome Robert.

Oh boy, Texas is a hot hot place! My husband moved there during college briefly, and worked outdoors. It was so hot, he moved back to Mich, and said he'd never go back! I've not taken ctx, but perhaps your doc's reasoning for IV ctx is sound under those circumstances. I'm sure others who have taken it, will jump in to offer their advice. Good luck to you.

[elephant]

Welcome! Hope the Ctx works for you and put the WG to sleep.

[Sangye]

That's a good reason for doing the IV form. I hope it works well for you.

[Michael Dean]

Welcome Robert,
I was diagonsoed in April. They have me on the same thing 60mg pred a day and ctx infusion once a month.
I'm goin in for my 2nd ctx tomorrow.

Good Luck, I hope it works.

[Robert]

Chris - yes it does get really hot here. It's not unusual for it to be in the 100s for most of the summer. I've always worked in the heat so I'm used to that. I just hope the meds will get me back to feeling normal again.

[Robert]

Elephant and Sangye - Thanks and I hope it works for me as well. I'm ready to get to feeling better and back to my normal routines.

MIchael - that's about the same time I was diagnosed as well. Have you noticed any differences since starting the cytoxan? Any side effects?

[Michael Dean]

I was really weak and short of breath right after the 1st ctx, for about a week. it's been over a month now and I feel great (probably the preds).
The 60mg of preds keep me from sleeping well. i'm doing good losing some weight and walking everyday really watching my diet. WG hit my kidneys so I'm trying to stay away from protien foods and drinking lots of water.
They told me after the infusion to drink alot of water to flush the bladder?
On my last blood test my creatinine level had gone back up. I'm hoping the ctx gets back to the low 1s?