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: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

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?

[vdub]

I hope you made it through the t-storms today! Welcome to the forum....

I was dx'ed April 2010. The preds will make you feel like a million, at least that was the case with me, but it can vary. They will also make you gain a lot of weight, so be prepared for that. I don't think it is something you can fight, at least not very successfully.

[Robert]

Micheal - it's good to hear that you're feeling better now after starting your treatment. I hope I have the same luck. I've been feeling weak and short of breath since I've been out of the hospital. The preds have helped with the body aches and chest pain but that's about it so far. I'm ready to finally get some energy back and hopefully get back to work. I'm not used to sitting around the house so much. It's driving me nuts lol

[Robert]

Vdub - made it through the storms just fine. Was mostly just rain. Thankfully no tornados or anything bad this time around. The preds seem to be helping some as far as pain goes but I still have very little energy. The weight gain I can understand. Have been eating a lot since I've been out of the hospital. It's prob good though considering I lost about 20 pounds in the past month before I was diagnosed.

[jmmilliorn]

Robert,
I think Sangye's advice to find a Wegener's specialist is good advice. I was diagnosed in Jan. I live west of Fort Worth sixty miles, and I had no trouble finding a rheumy to treat me, but they don't see enough WG to know everything they need to know to help you in my experience. Just enough to be dangerous. I finally wised up and went to the Cleveland Clinic where they see WG every day all day. What a great place! Within one hour they properly diagnosed me and reversed the wrong vasculitis diagnosis of the FW rheumy. She was close, but no cigar. I took Methotrexate from Jan to May, but had a toxic reaction. Now I am on Rituximab and doing better. The CTX is a stronger drug with more side effects I'm told. You won't believe how the Prednisone will affect you. It makes you feel better at first, but eventually drags you down. Unfortunately it is a necessary evil in obtaining remission it seems. I sleep 3 hrs a night (since my first WG symptoms in Aug) on average and I've gained 40 lbs. (see my album) Can't exercise it off yet because I am too short of breath from the Pred. and/or the WG. Can't tell which.

It is only a 2 hr flight to Cleveland, and if you have AAdvantage mileage, it is a cheap trip. They took my insurance and you won't find a nicer place than the C.C. They have an appointment desk that handles everything. I'd rather fly there than drive the 2 hours to Dallas to see someone who doesn't know WG like the C.C. My local internist coordinates with my Cleveland Clinic doc now that I've been properly diagnosed to handle day to day symptoms and meds. My CC doc gave me her iPhone number and email address, so we can communicate if we have to.

Best wishes to you on your treatment. I hope you prosper.

[kulharv]

Hi Robert,

I have just started the same treatment and will be getting it every 2 weeks and am on 50 mg of prednisone. Horrible. I did feel tired after my first treatment and yes running to the washroom at all times. They will probably give you Mesna as well which is to protect the bladder. I was given 2 doses while at the hospital and then 1 to take orally when I got home.
I, like Michael, cannot sleep and I think it is due to the prednisone as my dose is split half in the morning and half in the evening but without it I can't even get out of bed.

Hope you get your appointment soon.
Good luck!

[vdub]

One of the drugs I take is ambien so that I can get some sleep. Good stuff! Suspect I will be on it the rest of my life.

Like kulharv, I have a hard time getting out of bed. Sometimes it is really painful. An hour later after getting my drugs, all is "generally" well. Sometimes, though, not even the drugs will take away the aches and pains. However, I do have a small stash of oxy. I have used it twice in the past 6 months when the aches just got to uncomfortable.

I think about half of the drugs I take are to counteract the side affects of the drugs that are keeping me alive. In one case, I have a drug that counters the side affects of a drug that I'm taking to counter the side affects of a primary drug, i.e., 3 deep..... Are we having fun yet?

[Sangye]

Kulharv, unless you are on a very low dose of pred (eg below 5 mg) there is no reason to split your dose. That makes it impossible to sleep! You still might have trouble sleeping on 50mg but it will be better if you take all the pred first thing in the morning. Get your doctor's okay before you change.

You should also be taking an acid-blocker daily because the pred will destroy your stomach quite quickly.

[RudiK]

Hello Robert, I'm from El Paso/Tx where it gets pretty hot too. But, our humidity is nowhere as high as in your area. I was diagnosed about seven weeks ago. I started with 60mg Pred, which is now reduced to 10mg, I'm still on 100mg Cyclophosphamide in pill form, plus several other meds to counter any side effects. My bad cell count is now 30% of what it was in the beginning. WG did damage to my kidneys, the doctors are trying to stop any further deterioration.
Good luck to you.