Hives???

[DEE]

oops time for bed spelling gone preds tasken over again meant tolerate DEEx

[drz]

Sangye, my husband is at the hospital now going over all the doses he has gotten, and what he is getting today. They gave him ctx this morning and hydrating him now. His WBC was up to 15.30 and nuetraphills up to 1300. Also his creatine was up from 1.4 last week to 1.7 this week. Does that seem like a flare?? Could his blood results be different because he was drawn at a different lab? Or because we lowered his pred dose from 60mg to 50mg? I am panicing now he is going to get really sick again.
Pberggren, Carter is 8. I didn't know he could take ctx orally. Dr. never gave me an option.

Creatine levels can vary a few points I think without indicating a definite trend. I think they call it standard error of measurement since it is like BG readings for diabetes which often vary 5-10% just through retesting. My creatine readings have ranged lately from 1.3-1.9 but overtime the general direction will tell you if trend is up or down but one reading probably isn't significant unless it is a big change. When my WBC goes up it usually means I have a bladder infection. Then they put me on IV for antibiotic and to hydrate me plus flush out infection.

I think there is a reading for inflammation which might be more useful to learn about flareups but I count on doctors to interpret these for me even though some don't know how.

They put me on oral Cytoxan because they said it would be safer and easier to adjust in case of reactions and side effects. I am on 100 mg right now but was up to 150 till WBC bottomed out to 1.4.

Best wishes for success. It has to be more difficult to watch someone young fight this horrible disease.

[Sangye]

The 2 tests for inflammation are ESR/ Sed Rate and CRP/ C-Reactive Protein. The CRP is much better at detecting quick changes, like a developing flare. However, in some of us sneaky types, our inflammatory markers stay perfectly normal until the disease is highly active. My own don't go up until my lungs are full-blown hemorrhaging.

Talentx7, I'm assuming the reason they have Carter on IV ctx is that he's too young to swallow the pills? They're quite large. I don't know if they come in another form or can be prepared by a pharmacist for a child. Worth asking, since oral ctx is more effective than IV--at least in adults.