Cyclophosmophide dosage? Too high??

[drz]

My max dosage for CTX oral and azathioprine were both about 1 mg per pound of weight. When the higher dosages created problems they cut back till the CTX went down to 1/2 mg per pound and the azathioprine was only cut about 12 percent.

[Jen in Phoenix]

That does sound like a high dose of Cytoxan. I was originally started on Imuran but switched to Cytoxan after Imuran had no effect. When I was diagnosed I weighed 240 lbs and took 300 mg Cytoxan for 15 months. At my highest on oral prednisone, I was at 160 mg. I remember taking 120 mg forever (8 months or more), then slowly tapering down. I was also hospitalized for a week and given Solumedrol (intravenous prednisone). I was supposed to get 1 g (1000 mg) a day for 3 days, and then switched to IVIG for 4 days. But the hospital goofed and gave me three extra 1 g infusions of solumedrol. Man that stuff does a number on me. I quite literally gained approx. 5 lbs per day according to the bed scale, while getting the infusions. Then I had Cushings for about 2+ yrs after that along with the lovely "buffalo hump". Moral of the story - it always pays to check!!

[annekat]

Oh, man, Jen! That sounds like a huge amount of prednisone and did they ever goof on the Solumedrol! It's hard to imagine why they would not start you on CTX in the first place if they though you needed that much steroids! Better would have been CTX instead of Imuran from the start and fewer steroids, I think. I hope you got rid of the buffalo hump and are doing better now!

[Barry]

I was on 300mg a day for six months. I did weigh about 250lb at the time. The thinking was to get some control of the disease quickly before more permanent damage was done. It did work as far as stopping more damage from wg. I believe because of the quick hard hitting up front that my kidneys are now back to normal, lungs cleared up, and I got most(not all) of my hearing back. Note that was also before rituximab was fully approved in the US.

[mzschaumkell]

Thanks everyone for your responses, doctor STILL hasn't got back to me, I am tempted to drop it down to 200mg per day and get him to take it in the morning, but I will give her until tomorrow....from what I have read on these responses he is definitely on the highest dose by far, he was 104kgs on diagnosis (now 101kgs, about the same as you Barry).

How were your kidneys at diagnosis Barry and how about now? I thought the cyclo could effect kidneys in a negative way (maybe only from long term use!)

I checked about Rituximab and it is not funded in NZ for treatments of Wegs, so in other words it costs a lot of money and private insurance usually wont cover it.

[mzschaumkell]

Heard from doc today, she said it s only meant to be 200mg in the morn! not 200mg in morn and 200mg at night. Good to have that clarified. Blood tests were done this week and the white blood cell count is still normal and creatinine level has gone from 191 two weeks ago to 161 this time. So it is good news.

He has had no side effect from the 400mg of cyclo, so going to be strange to see what happens now, maybe he will get the insomnia from the pred haha due to go down to 40mgs on 1 August, so good timing!!

[annekat]

Oh my goodness! It seems like he'd be running out of pills too soon! Well, it's not a good thing to take that much CTX into one's body unprescribed, but sounds like he did OK and maybe got a head start at recovery! Best of luck to him.

[drz]

Thanks everyone for your responses, doctor STILL hasn't got back to me, I am tempted to drop it down to 200mg per day and get him to take it in the morning, but I will give her until tomorrow....from what I have read on these responses he is definitely on the highest dose by far, he was 104kgs on diagnosis (now 101kgs, about the same as you Barry).

How were your kidneys at diagnosis Barry and how about now? I thought the cyclo could effect kidneys in a negative way (maybe only from long term use!)

I checked about Rituximab and it is not funded in NZ for treatments of Wegs, so in other words it costs a lot of money and private insurance usually wont cover it.

My wegs expert at Mayo said it is approved for GPA in most parts of the world and said he would be surprised if not available in NZ. You might have to appeal to get. He said Australia has approved it along with Japan, China, and most other countries with reasonable health care.

[mzschaumkell]

Thanks Drz, I will ask when we have the appointment, I think it will only be if the cyclo cant be tolerated, but worth a shot, or even if he ever has to go on cyclo again (touch wood) that we could ask for it...