Hey, I have a quick question for all the parents who's children have been on Cytoxan. What was the weaning schedule for the pred once they started the new meds? My neph told us to wean Emma over a three week period. 1 week at 1 1/2tsp every other day, 1 week at 1tsp every other day and 1 week at 1/2tsp every other day. That seems too short of a weaning schedule to me??? After we were originally supposed to take 3 months to wean her off the pred, now it is only 3 weeks??? I know that there are alot of negative side effects associated with pred withdrawl if you wean them too fast so I was just wondering what everyone else's experiences have been. I don't know if they wean faster becuase the Cytoxan being in her system. Anyone had experience with this???
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Weaning Pred while on Cytoxan
- By kbarber2007
- Posted November 17, 2008 at 1:28 pm · 4 replies
- In Children with nephrotic syndrome
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- By Reneaorr
- Posted November 18, 2008 at 3:49 am
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Hello
My daughter was on cytoxan. I just pulled out my 2005 calendar to look at her schedule. She did IV steroid pulses, Solumedrol 900 mL every other day for 4 weeks with 60 mg oral prednisone(pills) on the other days. Then IV pulses 1 time a week for 5 weeks with oral prednisone the other days. Then oral prednisone daily for 3 weeks, we then added cellcept and started to wean the oral prendisone 10mg every two weeks. That lasted for 6 weeks, then she started Gengraf.
How many mL are in each teaspoon? If it is a low amount, then I can understand such a quick weaning period. Hope that helps.
Renea
- By LauraG
- Posted November 18, 2008 at 11:59 am
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I am copying and pasting our 3 month weaning process. We started the cytoxan and then once she was negative for 3 days we started the prednisone taper. And like I mentioned in a previous posting, when she got a cold we just didn't taper during that period.
13 ml one day, 10 ml the other for a week
13 ml one day, 7 ml the other for a week
13 ml one day, 4 ml the other for a week
13 ml one day, 1 ml the other for a week
13 ml every other day for a week
11 ml every other day for a week
9 ml every other day for a week
7 ml every other day for a week
5 ml every other day for a week
3 ml every other day for a week
1 ml every other day for a week.....
And then stop!
Right now we have about 3 weks left on cytoxan and we are doing 9ml every other day.
I hope this helps. Our doctor said that the steroids take over for the adrenal glands and so that is why you need to do a slow taper, so that the adrenal glands "get the message" to start working again.
Also, it probably depends what her steroid dosage was when you started the cytoxan. Our daughter was on the highest daily dosage possible so our wean is naturally going to be very long... if your daughter was already on a low dose then her wean will be much quicker. I hope this helps...and I am glad the cytoxan is working!!!
- By kbarber2007
- Posted November 19, 2008 at 10:13 am
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Thanks for all of your responses!! My daughter has never been on a higher dose than 15ml of Prednisolone every other day. Maybe that is why they are weaning her faster? We are now down to her 1/2tsp every other day so she only has one more week of the pred before she is completely off! I am so excited. We haven't been able to get off pred since Jan of this year. I haven't noticed any negative side effects that I could contribute to pred withdrawl but I have no idea whether it comes on immediately or whether it will take a few weeks for her to exhibit them?? Does anyone know?
Thanks again for all of your comments and support!! It really helps to have this website to be able to gauge other peoples experiences with this condition. I will keep both of your children in my prayers!!!
- By levismom
- Posted November 19, 2008 at 2:29 pm
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Hi,
My son Levi was on predisone for 9 months, and we slowly weaned him off of the predisone, I took him for a routine eye exam in August 2008, and they discovered he had pappallademia, which is caused from steriod withdrawl. I would recomend that you take her to the eye doctor for a routine eye exam where they dilate her eyes. I was told of all the side efects of the predisone, but never this one. My nep said they usually see this when people are on long term steriods. But we know that each case is different. I do not tell people to scare them, but make them aware, that this can happen. Levi has had 2 spinal taps, and is on dimoax 3 time daily, we actually go back to the eye doctor today, I hope we see some improvement. And the thing about it is Levi was not complaining of any headaches, or nausea. I just was taking him in because he was starting pre-k, and my 15 year old needed her contacts. I Praise God everyday, that I did. If you every want to talk email me.
I will continue to keep your daughter in my prayers.
Michelle
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