Those who have lost their lives to WG

[gwenllian111]

I wonder, if anyone knows, how those come to lose their lives to WG?

I'm sorry for posting such an emotionally emotive topic, but I just wondered how those come to lose the battle?

Thank you for reading my post.

Gwen

[delorisdoe]

I wonder that too. My doctor throughout my treatment called me a "hard to get into remission" case of wegeners. I think 2.5 years of cytoxan proves him right. I wonder how if I was difficult than how much more difficult would someone who did not make it be. I had my share of setbacks and side effects. Interesting to ponder for sure.

[gurinbasra]

I just read on Facebook of a lady who said her husband had just died from WG, but didn't know it at the time. So I'm thinking they must have done an autopsy and found out later. Wonder what % of those that died where actually diagnosed with it prior to death.

[pberggren1]

I think kidney failure would be the most common.

[Brooke]

I too wonder about this. hmmm...

[norcalian]

I was told by my rheumatologist that it's usually complications of medications and opportunistic infections, such as PCP (which is why I was scared when I had to deal with that a few weeks ago) that cause the deaths of WG patients. He said it wasn't too common for a Weg's patient's death to actually be caused by WG anymore. Perhaps that's just his experience...but it makes sense to me.

[pberggren1]

Oh yes, that makes sense then. I was just thinking of Wegs, not the whole patient in general.

[gwenllian111]

I was told by my rheumatologist that it's usually complications of medications and opportunistic infections, such as PCP (which is why I was scared when I had to deal with that a few weeks ago) that cause the deaths of WG patients. He said it wasn't too common for a Weg's patient's death to actually be caused by WG anymore. Perhaps that's just his experience...but it makes sense to me.

I can well believe this.

I'm starting cellcept again today. If this fails...well I don't even know how to end that sentance.

[norcalian]

I can well believe this.

I'm starting cellcept again today. If this fails...well I don't even know how to end that sentance.

I certainly hope that cellcept works for you. With all of the various drugs and treatments that they're coming out with, I can't imagine that they can't find something. I'll be sending good thoughts your way.

[Psyborg]

Gwen,

I hope the cellcept will work for you. Given your intolerance of immuno suppressants, has the doctor had any ideas on some of the newer investigative treatments? If the standard stuff isn't working I'd say it'd be worth it to try something like that, of course I'm no doctor too. At any rate I'll keep you in my prayers.