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Discussion Starter · #1 ·
Hi All,

Well we gave cellcept a good go, but my daughters side effects were too severe just on the lowest dose. She is to stop and start Imuran in 1 week. I know this one is not the choice drug for Sarah as she has a more severe type of Lupus and cellcept I thought would be better for her. I worry again about the side effects of Imuran and whether it will keep her Lupus at bay after having 7 mths of cyclophosamide. She is so thin, and has missed a few days of school. It has been so hard, she wants to be in school and is only a bit over a month back and she will need to make up time. I called the school to explain and they were very supportive.

I guess it will be a trial and error, and hope for the best.

Sharon mother to Sarah with CNS lupus.
 

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Discussion Starter · #2 ·
O.K. here we go again,

Sarah called has had the bucket between her knees all day. Then she informed me she made a mistake, she accidently took Cellcept 500 mg pill times 3 days then 1000 mg. today. She got the pills mixed up and should have been taking 250 mg times 3 days then 500 mg times 3 days then 750 mg. times 3 days.

The fellow called to check on her status and I told her Sarah got the 250 and the 500 pills mixed up.

So he said take the weekend off and try to start Cellcept again, then if this doesn't work we will start Imuran. She is 18 so she wants to be so dependent and has a pill box with 7 days but????

Sharon
 

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Sharon,

I know that Imuran was used post Cytoxan for years before Cellcept was created. Imuran was originally designed for Kidney Transplant Patients just like Cellcept was. I didn't tolerate Imuran but it is much gentler on the stomach than Cellcept is. Is your daughter also on Prednisone? Maybe she will need some prednisone to go with the Imuran. Not the ideal choice when you are 18 but hopefully with time things will settle down. I wish I could send you 30lbs for your daughter I would gladly get rid of that much weight. :hehe:

Take care,
Karen
 

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When my mother had kidney infections I used to take over her pills for her. Maybe if you explain to your daughter that its just being sick that is causing the problems she wouldn't see you helping with the pills as a lack of independence?
 

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Discussion Starter · #5 ·
Thanks Karen,

She was sick all night and got up to find her on the floor in front of the fireplace with a blanket, she didn't get much sleep and was vomiting into the night. She will be off cellcept for the weekend and to start on a low dose on Monday, then if she still has gastrointestinal complaints we will switch her to Imuran. I wasn't aware of the history of these meds. so thanks for that information. She is on 20 mg of prednisone, has has been on high doses mostly so I guess thats why we want to get these new meds. on the go. Its hard to see her sick, but she has come along way from how ill she was last summer.

On a lighter note, Sarah got a new kitten in Janurary and our other daughter got a kitten last Thursday, so they keep her entertained. They actually hated each other, but they are gradually becoming friends--I hope.

Sharon
 

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Sharon,

I am so glad she has pets to play with. I know how much my animals have been a comfort to me since I am unable to work. Will be hoping that the cellcept at the lower dose is easy on her stomach and if not that the imuran does the trick.

Take care,
Karen
 
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