My father has Wegener's--new to forum

[Alsky]

Hello,
I am so happy to have found this forum. My father was diagnosed with Wegener's in June, 08. He is 65. He had complications with his lungs (coughing up blood), kidneys, and some skin problems. He lives about 1.5 hrs from Duke so we are lucky that we had access to such a good hospital. He became part of a clinical trial and went on Rituximab (Rituxan) and prednisone. Things seemed to be going well--they said he was an "early responder." But--his kidneys have been getting worse over the past month and they have now switched him to Cytoxan. He has been on Cytoxan approx. 3 weeks. He went to the Dr. today and his kidneys (creatinine) are only getting slightly better. Creatinine was around 6 at the high point and down to 5.1 today I think. He's been very anemic since January, and although his hemoglobin was up to 10.8 last week, it was 8.5 this week. He is very upset and depressed and feels like this treatment is not working and assumes (maybe correctly) that this is the last treatment option (b/c he already did rituxan).
So...my father is not the type to seek out support or even learn about his disease. He is a manual laborer and works very hard. He has slowed down some but he owns his own business and he either has to keep going, or close his business--tough decision. I can't seem to find anything on line about how long it takes for Cytoxan to start working and start seeing results.
I am his advocate but I live two hours from him and 3.5 hrs from Duke. I work full time so it is nearly impossible for me to go with him to every Dr.'s appointment--but I do try to go sometimes. Admittedly, I haven't read through the info on this forum very much yet, but I am interested in anything and everything that you may want to share. Thank you!

[RCOSSIO]

I have been on Cyto for three months and my creatine levels are back to normal. I did start out at 100mg daily and then was bumped up to 150mg based on my height and weight. As soon as the Doc bumped me up to 150mg my numbers improved dramatically. Cyto has its downside as well if used too long. However the upside is that after 6 months I may be able to switch to Methotraxate. Anyway, tell him to keep his chin up and be patient as the drugs do work.

[andrew]

I echo what Richard said. It could be as simple as the doc bumping up the dose. There are other drugs and cmbinations of drugs. For example, Methotrexate can be used in conjunction with Cytoxan. Also, the doc can put your Dad on monthly infusions of Cytoxan and/or Methotrexate for example, which is much stronger. There's a world of possibilities

You Dad is in a difficult position having to run his business. Is there anyone that can take over for him for a while? He might find better results if he stopped for a time. When I work my guts out as I tend to do too often I come crashing down after a few weeks and have to have some down time. Extra stress such as that can have a negative effect.

Welcome to the group! How is your Dad doing now?

[Alsky]

Hi,
Sorry for the delay--I wrote a lengthy response the other day but my computer froze!

Anyway, my father ended up back in the hospital (Duke) last Tuesday night b/c he was having a really difficult time breathing. he is still there. They think it is pneumonia. He responded almost immediately to the antibiotics, but he has had some other problems since then. The other night his heart rate got into the 160's and now they want to do a cardioversion "shock" to his heart. It was scheduled for today but postponed b/c his creatinine went from around 5 to 7 since yesterday (it has been around 5 for a while now). They took him off the cytoxan several days ago so it could be a flare or due to the fact that he is not eating/drinking well.

It is tough--he is kind of "out of it" due to the heart meds (and ALL the other millions of meds they have him on), and I am at the point that I just want him to come out of the hospital--I'm worried he's getting too much treatment. There are lung Dr.s involved (lungs were bleeding), kidney docs, rheumatologists, cardiologists, and docs from medicine who are attempting to coordinate everyone else! They are disagreeing over whether to do the cardio version (but have decided to do it at this point) b/c he has to go on blood thinners and that is a risk b/c his lungs were bleeding (they are not now). UGH!

Anyway, I don't know what to do, but hospital scare me sometimes. He is in there to treat problems associated with WG, not get his heart fixed. We know he's always had a heart murmur but never any problems with it. I hate to see him like this, and am really worried he's not going to come out of it. When I read that around 90% of people end up living pretty normal lives, it makes me optimistic, but this is hard.

so that's the update....

[andrew]

Yeah, that's certainly a tough thing to handle.

WG has many weird and wonderful manifestations so it's not uncommon to have several docs working with the one patient. I had several myself while I was in hospital, including students (apparently I was a fascinating case).

I see he's had a murmour previously but have the docs suggested that the recent issues heart issues could be something to do with the WG?

I do hope he's home with you soon!