I.V. Immunoglobulin and Plasma Exchange

[Al]

Thanks guys, it is quite confusing, I've tried several times to look it up myself but just get confused. He only had one cyclophosphamide dose and caught pneumonia and ended up in intensive care, he was too weak for the second dose of cyclo after that so that is why they said they were giving him immunoglobulin instead if that sheds any light on it.

It does shed light. It sounds like they decided the certainty of infection trumped the possible benefits of the CTX. IVIG is pretty common for serious infections when the immune system is at a low ebb. Your father must have been pretty weak. Pneumonia without a functioning immune system is horrible.

Al

Al

[delorisdoe]

It does shed light. It sounds like they decided the certainty of infection trumped the possible benefits of the CTX. IVIG is pretty common for serious infections when the immune system is at a low ebb. Your father must have been pretty weak. Pneumonia without a functioning immune system is horrible.

Al

Al

I have my own new theory. I have been told that Ivig is a useless treatment for wegeners so I decided that I went into an 8 year remission due to how low my wbc was due to the 2 years of ctx. My theory is the ctx almost killed me and in doing so wiped me out not only of my immune system but also of my wg problems. The ivig was just need to get me healthy again.

[Al]

I have my own new theory. I have been told that Ivig is a useless treatment for wegeners so I decided that I went into an 8 year remission due to how low my wbc was due to the 2 years of ctx. My theory is the ctx almost killed me and in doing so wiped me out not only of my immune system but also of my wg problems. The ivig was just need to get me healthy again.

Leigh, your theory is, in fact, the entire principle behind CTX! you are surely right about the IVIG too. I'm glad it worked long-term for you. For me, it had to be repeated. Drac says that he won't to CTX again--the risks outweigh the benefit. If I need it, I'm guessing that RTX is up next.

Al

[delorisdoe]

I am going to assume I too will never be on ctx again...2+ years was aprox 1.5 years too many.

[drz]

Leigh, your theory is, in fact, the entire principle behind CTX! you are surely right about the IVIG too. I'm glad it worked long-term for you. For me, it had to be repeated. Drac says that he won't to CTX again--the risks outweigh the benefit. If I need it, I'm guessing that RTX is up next.

Al

I think several of us are in the same boat. RTX is our back up plan if we have a serious flare. We have done the CTX thing and it wiped out our WBC several times while trying to control the WEGS.

[delorisdoe]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

[Al]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

Well, I guess this is a treatment plan of sorts--the anti-plan plan. But, then, when you are under the protection of the gods....

Al

[pberggren1]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

Shame on you. Does Batman have to pay you a visit?

But seriously, you should be talking with your doc to use rtx next time. Hopefully there is not a next time but one still has to plan ahead. I am still working with my doc to make sure I have financial coverage from the government for rtx so that next time we can use it right away instead of waiting 3 months and having to use ctx and then having the ctx wreck my bladder and do other nasty things.

Trust me. Back up plan is a MUST.

[Al]

Trust me. Back up plan is a MUST.

You see, Leigh? Batman is not mean--he loves you and wants the best for you. Listen to his nag and take your medication, and heed, dammit! we need you around for years to come...

Al

[delorisdoe]

I deal with stuff as it happens