CellCept...?

tr9736
1 Recommendation

2nd line drugs are very confusing... I've read so many posts of different drugs once you become pred dependent, resistant, etc... I am confused as to what determines the 2nd drug is used? Cytoxan, cyclosporine, cellcept, levamisole, etc..etc..

can you post what 2nd line drug your child took (or is taking) and what effect/side effects they've experienced?

My 2 yr old is getting ready to start CellCept and now am researching that drug -- it looks like he is going to be pred dependent since he had a full relapse during the initial phase of tapering...

if anyone has experience with CellCept (good, bad, or yet to be determined) I would love to hear from you. I'm looking for effect (positive/neg), side effects, length of time on it, in conjunction with any other drug, temperment/appetite during course of tx, physical changes, etc.. anything at all you can share with me would be appreciated. Textbook definition is one thing, but no info is better that that of those on the actual drug... tr9736@bellsouth.net
Thank you all once again for your support during this 'journey'...

11 replies

MariekeV
  • By MariekeV
  • Posted April 4, 2008 at 4:02 am

Hi,

I only know that within a short period of time there will be a publication in Holland about the effects of Cell cept. This has been a trial also with children.
If I know anything about it but I do not know when it will be published and where I will put it on the forum.

duker
  • By duker
  • Posted April 4, 2008 at 8:11 am

Hi,

My daughter is steroid dependent. She has been taking various drugs for the last 3.8 yrs. She actually does respond to steroids, but cannot get off of them completely and the difficulty in her case is the bone issues from the steroid toxicity...

her course was, prednisone, then cytoxan -12 weeks(still w/ prednisone- and she attained a few months remission)

then cyclosporine for 1.5 yrs (w/ prednisone and attained a 7 month remission)

then prograf (w/ prednisone - only a few 2 month remissions)

and now -- cellcept AND prograf AND a tapering dose of prednisone. I was petrified of cellcept b/c I could not fathom giving my child something that I could not get on my hands!!. But there really wasnt much choice. she is doing well - has been on 200mg 2x/day of cellcept for about a month. she has had 2 headaches, but I am not sure if this is from cell cept or just allergies starting.

cellcept will be checked by actually checking her white blood count and making sure it does not plummet too low. prograf is checked w/ an FK level - they run her "high" at 9-10. I dont think cytoxan itself was checked - but my doc was emphatic that it not be used past the 3 month mark b/c of cancer. also cyclosporine is given its own blood test too - I know they ran my daughter around 133 - but we stopped that med 1 yr ago when we started prograf. the thing to note w/ prograf is that if you have loose bowels or diarrhea it can cause the med level to spike. this was my daughters problem and for months she her levels bounced from 27 to 3 to 15 to 8.

as with cyclosporine, prograf can actually scar the kidneys themselves so it is impt to get checked often for the levels in the body.

feel free to email me directly at pamduke@comcast.net unfortunately I know quite a bit about these meds. :)

but dont despair. just b/c your child has had a tough time on the first go around with pred, that does NOT mean that he will never respond. I know of several kids who responded well to prednisone AFTER their course of cytoxan. it seems like these additional chemo drugs can (in a good way) shock the body into responding to the steroid. and eventually you can wean off the pred.

best of luck!

mamagemini

I have been on it for over a year now. Started at 1000 then down to 750 and now 500. My pharmacist freaked when I came in with the first prescription. He wanted to call my doctor and verify this is what I was supposed to take.
So far all my blood tests have been okay over the year. Just my protein and albumin levels go wonky. As per the disease. I worry every day that I may get cancer over this drug but what choices do I have? I can not take high doses of Pred cause it does nothing for my kidneys. I stayed high in protein spill for the whole time. As soon as I got it down to 5mgs every other day my protein dropped. So you tell me...what was the choice? Cellcept works it takes a year or more for it to really show any change but it does work.
Good luck to you!

s-nathan
  • By s-nathan
  • Posted May 10, 2008 at 3:19 pm

Our son with a biopsy-confirmed MCNS diagnosis has been on prednisone for the past 20 months. He is steroid-dependent and we have been unable to get him off the steroid. Cytoxan did not work for him. We are trying CellCept now.

There is some literature that CellCept may be a good option for "steroid-dependent" kids....search for Bagga (author) and steroid-dependent MCNS. It looks like Cytoxan may be a good option for "frequent-relapser, but not steroid-dependent" kids. Search for 1982 New England Journal of Medicine (NEJM) article on Cyclophosphamide.

Mamagemini...question for you...pls elaborate on time it took for CellCept to work and how do you know it is working

HH
  • By HH
  • Posted June 20, 2008 at 12:59 pm

How would you describe the difference between a frequent relapser and a steroid dependent person. My son has had 4 relapses in 9 months and only gotten completely off the prednisone once for 10 days. He does respond to the pred and goes to negative on the albustix but starts to spill again before we get him all the way off the pred. However 3 of the 4 times he did have a cold when he relapsed.

tr9736
  • By tr9736
  • Posted June 20, 2008 at 2:42 pm

that is a good question, and I'm not sure on the answer. So far the exact same thing has happened to my boy, but there was 1 time I could not really account for the relapse -- all others was due to a cold or stomach virus. I think the Neph calls him 'dependent' because he seems to be relapsing while on hi doses of pred...
Update on my son now: He's on his 3rd week of Cytoxan (since Cellcept didn't do anything) and he's been negative for 14 days and have started tapering pred (currently taking 4cc 2x day). So far, so good... Frankly, I think we just wasted too much time on cellcept -- but then again, who'll know what's going to work until you try it.

Boussaar
  • By Boussaar
  • Posted June 20, 2008 at 4:58 pm

I have FSGS and have been on Cellcept since 6/28/07.
Started out with 1,000 mg per day and now am down to
250 mg. My hair got very thin but has started growing back since my dose was reduced in March. NO bad side effects but this is a dangerous drug. My neph told me that and everything I read supports that but I have not had to go on dialysis and for me it has been worth the risk. Hope everything goes well for you.

s-nathan
  • By s-nathan
  • Posted June 21, 2008 at 8:26 am

Frequent relapser will have some time off from prednisone between relapses where as steroid dependents will not have any time off from prednisone.

2007concerned

Hi- My child was the same age and also took cellcept. No noticable side-effects for her, but then at 2, who knows... nothing showed up in the weekly blood work. For us, it did not improve the situation after at least 16 weeks or longer. We also were on cyclosporine for a couple of days, the kidney function plummeted, so we were quickly removed. Currently we are on Prograf with enalapril. At this point we are off of all pred and additional meds. From what I have heard/seen, the same course just does not necessarily work for all kids. Like the one person above said... I have been told if we make it a year on Prograf and successfully wean off of it, if we have a relapse, the pred might work that time. The info I had all pointed that cellcept had the list risk of the other drug options. Hope that helps!

linda717
  • By linda717
  • Posted June 28, 2008 at 8:11 am

My neph is taking me off cellcept, I was on 3000 per day, now 500. Started Prograf in January and my protein has dropped over 1000! So in 3 months he wants to take me off cellcept altogether. The only side effects I had were stomach problems. At the beginning of my illness in 2006 my protein was over 8000, now I am at 2500. I asked him about cellcept and he said most people have problems right away if they are going to react, but the benefits outweigh the risks. Aren't all medicines risky? I broke both my feet when I was on the steroids, now I have to take fosamax and vitamin D.

mamagemini

Yes Cellcept is a booger...but like we said it far outweighs what it does as to what it can do. if they could only take out the part that causes cancer that would be so much better for all of us!!
I have been on this for over 1 1/2 years and my protein has gone down from 17 to 7 so yeah I would rather see this happening and leading a somewhat normal life than a life dedicated to prednisone. I would take anything else other than that evil drug.
with Cellcept the first thing my nephro asked me was "are you going to get pregnant or want to?" I replied of course not... I have my 2 and closed the store. So I went for it. I needed some relief and got it with in a year.
linda - seems to me my kidneys react to vitamins different then they use to. I can take vit e for a few days and then I get a headache and nausea. I wish I could take more, it sure would probably get me better faster.

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