Cellcept - typical dose

[Theresa]

I took Justin to the ER today. *I'm glad we came here, they have admitted Justin. *His hemoglobin level had dropped from 8.1 to 4.7 in 2 weeks. They have done a bunch of tests but have not yet determined the cause. *He is getting 2 units of blood tonight.*

I am concerned that this might be due to the cellcept. *

Theresa (Justin, 4/2010)

[Sangye]

Oh no... No wonder his heart rate was so elevated and he was light-headed-- both very common with anemia. Why was his hemoglobin so low to begin with?

Have they done a chest CT? They should be looking for alveolar hemorrhage. Does he have a cough, even a small dry cough?

[Theresa]

Thanks, Sangye. They have been treating him for Anemia with iron for the last few weeks but prior to that, not really worried about it. So I don't know why it was so low. it has been between 7 and 8.5 since April. They have not done a chest CT - I will ask for that. No cough at all. They did an EKG and that was ok. They do hear a flow murmur which is probably due to the anemia.

[Sangye]

I hope they can figure it out. Both times my lungs have hemorrhaged I barely had a cough. No one would even call it a cough, just sounded like a little tickle in the throat. I'm glad he's in the hospital so they can keep him safe while they figure it all out. Take good care of yourself, Theresa.

[Theresa]

Thanks, Sangye. I'll ask about that and watch for a cough.

[elephant]

Theresa, how is his kidney function? That can cause anemia. Hope they find out soon to what's going on with Justin!

[Theresa]

Elephant,
His creatinine is 1.6. I'm going to ask more questions about kidney function today.

Sangye,
They just woke us up and took Justin for a chest Xray. Not a CT but I'm glad they are looking at his lungs.

[Sangye]

With active Wegs, the 2 most likely places for him to be losing blood are lungs or kidneys.

I'm glad they're doing a chest x-ray. If they see anything that looks like "atypical pneumonia" or "infiltrates" make sure they do a chest CT. That's what bleeding in the lungs can look like on x-ray, though many docs don't seem to know it. When my lungs were bleeding in the past my x-rays only looked a bit off. The CTs looked horrible, though. Alveolar hemorrhage on a CT looks like "ground glass opacities"-- a fancy name for solid grey.

They may find something but think it's not "enough" to be causing problems or to be Weg's-related. If that happens, question it. Last year I was discharged from the hospital with bleeding lungs because the non-Wegs docs said there would be more blood if it were Wegs. Dr Seo said any blood in a Weggie's lungs is due to Wegs.

[elephant]

Justin's creatinine is a little elevated esp someone his age. They need to check more into the kidney too, along with the lungs. Have they done a stool sample to see if there is blood in it. With all the meds he's on it ...can cause some bleeding.

[WeggieParent]

Theresa,

My daughter is 15 yrs old and has been taking cellcept 1000mg AM and PM since June. So far she hasn't had any problems with it. She had 3 months of IV cytoxan in the hospital and we had a hard time getting her blood pressure/heart rate controlled but eventually they returned to normal. I am glad you have Justin at the hospital where they can take good care of him!! Sounds like he's got something going on.