Bilirubin

[Brooke]

Hi -

I had blood work last Thursday to check if my B Cells are coming back, I also had a CBC and I can't remember the other name of the blood test, to check my liver.
My BCells are back at 5%, I am not really sure what that means, I am waiting to hear back from Mayo if that is enough to do the Rituxan again. All my blood work was good except my bilirubin was up a little bit. My doctor told me not to worry and that it could even be a fluke. He is going to call Mayo and see if they want another blood test done or possibly ultrasound of liver. So of course I am nervously waiting to hear what to do. I am on Bactrim, Azithromyocin, Prilosec, and symbicort. He said it could possibly be the meds or even Wegeners? I have had a little stomach pain off and on for a couple of months and I am wondering if it might be the Azithromyocin? Also, I don't have diarrhea but my stools are not completley together.

[Sangye]

As long as your liver enzymes are okay it's probably nothing to worry about-- a fluke, as your doc said. How are you feeling otherwise? Still good?

[Brooke]

Thanks Sangye, yes I believe all of my other enzymes and everything were just fine. I have been feeling great energy wise and breathing wise. I just have a little tummy ache off and on, maybe my nerves/anxiety and/or meds. I have been working out since January and have been losing weight and I have been eating good foods, sometimes on the weekends I will eat not so healthy.
I am just nervous about that blood work and doing Rituxan again.

[Sangye]

I'm so glad to hear how well you're doing! Maybe they'll delay retreating with rtx since you're feeling well?

[Brooke]

That's what my dad said too Sangye. All I know is my doc at Mayo said she wants to keep the Wegener's at bay and I believe thats why she is wanting to do the Rituxan again. She said if she didn't put me on Rituxan, she would be putting me on a maintenance drug. Maybe I will call there and ask if I should/could do that instead? If I am on a maintenance drug, I want to be on the safest one, with no side effects. If there is one!?

[Brooke]

I should add that my sinuses seem to get inflamed or infections easy, that is why I am on Azithromyocin for a couple of months. My ENT in my home town said the Azithromyocin will help with inflammation. So, I think my biggest issue is my sinuses, I don't think they will ever be back to normal. I wonder if another round of Rituxan would help anymore with them?

[Sangye]

Did the rtx help your sinuses before?

As far as maintenance drugs, they all have side effects and it seems they all have a similar level of risk. Some people have troublesome side effects, and others say they don't notice much. It may be trial and error to find the right one if you have to go that route.

[Daggar]

Hey Brooke - for what it's worth this is what I've gathered from dealing with Holly's elevated liver enzymes...

Was it the "total bilirubin" that was elevated or conjugated vs unconjugated? That is usually how they can narrow it down to the cause.

If your AST, ALT, GGT, ALP, LDH are all normal it may just be a "fluke" as your doctor said because it is unusual to have one without the other.

If the abdominal pain is on your right side below your rib cage it could mean an issue with your liver (possible drug toxicity) -- the Azithromyocin causes a dull ache across your abdomen.

Sometimes a quick rise in RBC (recovery from chemo dose .... meds...) can increase the bilirubin a bit as well....

Hope they get back to you soon - I hate the waiting to find out as we're doing with Holly right now.... it's the worst!!

[Brooke]

Yes, the Rituxan helped my sinuses before.
Hi Daggar, actually I feel like I have both stomach problems. On Saturday, I did have pain on my right side below the ribcage but I have also been having the dull ache. I believe all of my other blood work was good. I am hoping it was a fluke. Waiting to hear if they want the blood work repeated. My doctor also said, that my body might be "adjusting" if my B Cells are coming back.
Would Rituxan cause Toxicity?

[Brooke]

Daggar, I am not sure what one was elevated. I will have to ask.