Over medicating?

[Beth Ann]

So we're finally getting the ball rolling and my mother is being treated. She received 1,000mg of pred through IV the last 3 days and is going to begin starting oral form tomorrow (not sure how much) she also began taking 150mg of ctx. Were contacting JH on Monday morning and we're planning on being very persistent with this because I don't want them to make any mistakes and I know how strong ctx is. Do these dosages sound about right for someone who was just diagnosed or are we under/over medicating? Im so new to this and everything they do I feel like i need to question.

-Brittany

[elephant]

Are you seeing a Wegeners specialist at John Hopkins Monday? If you are you will be in good hands. The cytoxan seems right, but some of the others may tell you diffent. Welcome to this sight. Sounds like you guys are on the ball!

[Beth Ann]

No were not seeing one on Monday she was just diagnosed on thursday night and were just trying to get her atleast on some medication to get things moving here. I want her seen at JH as soon as possible because it is effecting her kidneys (really her only issue at this point/some sinus involvement) and we only have renal guys involved here so far. I just want to make sure everything is being done properly and we have all aspects covered.

[NicShaf]

The Ctx dose seems correct, think it is somewhat based on weight, and 150mg seems to be the common doseage. Is she also on Prednisone? How about a preventative antibiotic?

[Beth Ann]

Shes been on 1000mg IV dosage of prednisone for the last 3 days and is starting oral tomorrow. Im not sure on how much. Do you know what is typical to start off with oral? Is ctx what they usually start someone off with as well? Ahhh my head is spinning with so many questions already and we just started out journey. Im so happy I found this site it is so wonderful and it gives everyone (family and patients hope to hold on too)

[ArlaMo]

I started off with 150mg oral ctx and then was bumped up to 200mg when my creatine kept rising. I was on that for almost a year, until I had my first rtx infusion this week. As far as prednisone, I started on 60mg oral and was on that for quite awhile. I'm still on 40mg until I'm through with the induction period for the rtx and then hopefully, I can start to taper.

[Sangye]

Those are normal dosages for severe disease, Beth Ann. The 3 days of IV prednisone at 1,000 mg is called "pulse steroids" in case you see that in her records. That's the highest possible dose of prednisone and is standard for emergency situations. It sounds like her kidney involvement is severe, so this is appropriate. The dose is extremely hard on the body and mind. It makes you have incredible mood swings, anger, depression, etc.... Please be patient if your mom experiences this. I wish I could convey how difficult it is to be diagnosed with something like Wegs and then have to do pulse steroids right away.

The oral cytoxan dose is determined by her weight. 150mg is the typical dose. Make sure they have her on a stomach acid-blocker. That is absolutely essential with high-dose prednisone. It's standard medicine but we've had members who were never put on one. If she has stomach pain taking the cytoxan, it's okay to take it in 2-3 doses. I couldn't tolerate more than 1 pill (50mg) at a time without getting severe stomach pain. Finally, make sure they've told her to drink LOTS of water while on the ctx and pee every time she feels anything in her bladder. The ctx should not sit in the bladder at all.

[Sangye]

Also... oral cytoxan (ctx) is used more than IV ctx because it's more effective and easier to control if she needs to lower the dose or stop it.

[Daggar]

Cyclophosphamide -- The usual numbers are 2mg/kilo body weight... but when kidneys are involved they may be more aggressive early.

I know you're worried about "over-medicating" at this point but it is better that they control it quickly due to the kidney involvement!

[Daggar]

Sangaye must of hit "enter" just before I did.... lol

[Sangye]

LOL--Daggar

BethAnn, also it's okay to take the ctx with food. I couldn't tolerate it on an empty stomach and my docs said it was fine to eat first. She should not have any stomach pain with it, and if she has nausea it should be very minimal and transient.