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Our daughter was diagnosed with MCD this July. She has been on prednisolone since then and had 1 relapse and is most likely relapsing again right now. Her protein was a 2+ this morning. Today her nephrologist told us we may want to consider other medications such as cyclosporine and cytoxan. Can anyone share their experience with any of these meds and your MCD? Thank you.
Cancer CellCept Imuran Cyclosporine Prednisolone Cytoxan Prednisone
I am surprised they want to start the other meds so quick. My sons neph drs. told me at first they would give the steroids at least 6 months before starting other meds. He didn't go in a remission until we started the cellcept. He tried the cytoxin which didn't work for him but has worked for others his side effects on that was just some hair loss and a up set tummy sometimes. Best of Luck
I agree with babywithfsgs, it seems a bit soon to go to Cytoxan - however we just finished our 12 week treatment, and it has put our son into remission...He was diagnosed in 2006 with MCNS, and was on and off prednisone for the past three years (Mostly on). The longest remission we acheived prior to the Cytoxan was when we used Imuran which is another immunosuppressant. His remission lasted for 4 months. It's been three months since Nick has taken any prednisone, and about a month since he's been off of Cytoxan. So far, so good. I'm slightly superstitious, so to type that worries me some ;) - I don't want to jinx anything!
Our experience was a positive one so far with Cytoxan. The side effects were minimal, and for the time being I feel like we have our 'true' child back (not medicated and moody from the illness or drugs!)
Best of luck to you. It's not an easy decision to make. I would ask about Imuran to see what your nephrologist says before going to cytoxan.
I'm 48 years old and was diagnosed with FSGS in March and was put on Prednisone. I relasped about two months later after i went from spilling 5.3 grams to 1.8 grams of protein. In July I was put on Cyclosporine and weaned off Prednisone (I'm now totally off Presnisone). I'm taking 100 mg of Cyclosporine twice a day. Sometimes I get a little upset stomach, but other than that it's so much better than Prednisone which I think is a real wicked drug. My last protein reading was 0.85 grams so I know that it's going well. If you can get away from Prednisone - do it!
Hi Jenbres,
My son also is thought to have MCNS and has been on pred for nearly two years. We have tried Levamisole for the last four months and he relapses on this too. At our last appointment we were told to look at a drug called Cyclophospamide as this is what they want to try next. Do you know if this is just another name for the one your son has gone into remission with, only it seems to carry the same side effects. The reason I ask is that I was told that by given my son this drug it would increase the chance of him getting cancer in later life not just hair loss and the others. I have been really scared as I have to make this decision within 4 weeks if I am going to let him try this drug. I can’t bear the thought of freeing him of one illness only to maybe give him something worse. The effects of the pred against cancer suddenly seem worth it. Any advice would be greatly appreciated.
Im so pleased for you and your son and will keep my fingers crossed he stays healthy
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Hi Fosh,
Cyclophospamide is the generic term for Cytoxan. As far as increasing Nick's risk for cancer later in life, I don't recall that as a side effect, but at this point the side effects of all the meds he has taken have potential to take their toll. The most concerning side effect to me was sterility. I don't know how prevalent it is, but it was mentioned. My husband and I evaluated the side effects of cytoxan vs. prednisone, and the chance that it would put him into a prolonged remission. To us, it was worth the chance. It's a very difficult decision to make, but after seeing our son on prednisone for three years (with limited remission when off of steriods), it was a decision we were willing to make based on the advice of our nephrologist, and the input from another mother who had success with her teenage boy using cytoxan.
They way it was presented to us, is if your child has success with cytoxan, it will put him into remission, and if he does relapse, the prednisone works more effectively and quickly when needed. The most unfortunate part is there is limited information/research out there to show why/how this works, but for some it does...
I hope this is of some help. Only you can decide what is best for your child. I don't know much about levamisole - if it's another immunosuppressant, and you had some success with a short remission, that may be a positive sign that the cytoxan will help him - this is of course PURE speculation on my part.
Nick was classified as steroid dependant. He would quickly relapse once weaned off of prednisone. Imuran helped him achieve his first prolonged remission, and now cytoxan is helping him achieve this one (hopefully for a long period of time).
Another thing to keep in mind is that cytoxan suppresses the immune system, so any illness can be more harmful to your son than most others. We did weekly labs to check Nicks White Blood Cell count to be sure his body wasn't fighting infection, etc. It's a closely monitored treatment, and if things aren't going well, they should suspend treatment until his levels are back in check.
Has your son had a biopsy? We had one done in October of 2008. It may be something to consider to confirm MCNS or to see if it's possibly FSGS.
Please let me know if you have more questions. I know it's a hard decision to make.
Best wishes to you and your son.
JenBres our stories are almost identical. My daughter is 11 years old and was diagnosed with MCN on December 22nd 2008. We were told she was Steroid Dependant in July. On July 24th Kenzie had a biopsy and was definitely diagnosed with MCN. The beginning of August she started taking the Cytoxan and she will be on it for 12 weeks also and she also has to get blood work drawn every two weeks to check her White Blood Count. My daughter has been in remission for 11 weeks now and off of the steroids for one week. I want to tell everybody that Cytoxan really helped my daughter. Our Neph said she really did well on the medication. She get's off of it next thursday the 29th and she will finally be off of all meds. Her Neph told us that she could stay in remission for up to 18 months and she may never have another relapse and he did say that if she did then the steroids will be much more effictive for her. She won't need to be on them for long periods of time anymore. I also heard about the possible higher risk of cancer later in life and the sterility but our Neph said that they put our kids on such a low dose of the Cytoxan, it is not the same as treating a cancer patient. So my daughter really had no side effects from the Cytoxan.
very much like the story above, I have only positive things to say about our experience w/ cytoxan. We just now are finishing our 12 week course and he has stayed in remission this whole time and is now off steroids. We have not had any side effects. We are praying for a long remission! We had multiple relapses as soon as we weaned prednisone even a little bit prior to the cytoxan. Ths has been our longest remission.
God bless- for us, we had a good experience w/ cytoxan.
I TOO AM SURPRISED THAT THEY WANT TO START YOUR DAUGHTER SOOO SOONN ON THE OTHER MEDICINE. MY CHILD WAS DX'D WITH MCD JUNE 07 AND IS STILL ON THE PREDS. HE IS ALSO STEROID DEPENDENT. HIS NEPH IS JUST NOW TRYING TO WEAN HI OFF THE PREDS TO START ANOTHER MED. PROGRAF TO BE EXACT. HE DOSENT WANT HIM TO BECOME RESISTANT, SAYS HE'S BEEN ON THE PREDS LONG ENOUGH. I WOULD QUESTION WHY. JUST ANOTHER OPINION. GOOD LUCK.
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