long term use of cyclosporine

well my son is now 16 diognosed with fsgs/diffuse messengial, segmental bla bla. too long. he was diognose at 2 like everyone, started prednisone, on it for 5 years. finally got him off and on cyclosporine for
9 years. damn thats a long time. i know that many of your kids have been on it longer, and this is where i am hoping i can get knowledge. what can i expect in the future. how long can you be on cyclosporine without having irreconsiable side effects. whats next???????

kat

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My son was on cyclosporin for about five years then he started showing symptomes of toxitity to the kidneys so it was discontinued . Once they start having toxitity to the cylcosporine they can never be put on it again so the doctors started giving him the tracolicamus a cousin of the the cyclosporine and was fine for about another five to six years then he became resistant to this medication, so now he is on cellcept. Just educate yourself on on the side effects of the cyclosporine and follow the doctors order very carefully . As soon as you notice the side effect let your doctor know immediatly this is very important.

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Hi...My son has been on cylcosporine for a little over 3 years now.How do you know when its becoming toxic to the kidneys??? Currently he is relapsing while on the cyclo enalapril and cozzar.This is the 2nd time relapsing while on the cyclo.Last time we added the prednisone but I SO don't want to go that route again.

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Great question Julie. I am wondering too . . .

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I was on Cyclo for over a year and did fine with it until I had a major relapse in January. I have been on Pred since January and started cyclo again in June. The first time I was on it I had no lab work monitoring the cyclo. My doctor at Mayo's who started me on it in June has run a couple tests to make sure it is at the level in my blood that they want it to be. Have you ever had these labs done? This was the first time I had heard of them. I seem to be getting along ago on it....will be off prednisone next week...hoping I don't relapse. Really tired of this disease. Does anyone really know why one gets minimal change disease? I would like to know what the symptoms of toxicity are also.

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Our daughter was on cyclosporine from 1992 to end of 2007--fifteen years. They watched her labs closely and when the creatinine and other tests started showing changes and the blood pressure was harder to control--she was taken off it--at the same time she began a nephrotic relapse. So that's when they put her on Cellcept-Dec. 2007. Cellcept was tried at various dosages for a month or so to see if would take her into remission without prednisone. It did not stop the relapse (protein spilling) and of course she was swelling and pretty sick. Prednisone was given along with the Cellcept. AFter remission was reached, prednisone was tapered very slowly over 6-7 months, but the Cellcept was continued. That last relapse ended August 2008 and she has not had a relapse since. Her labs have looked good--better than the last labs at the time of ending cyclosporine. It certainly looks like cyclosporine was a life-saver, reducing the remissions to maybe yearly or every few years until side effects counteracted the benefit. Now, we're very thankful the Lord has provided another drug, in Cellcept, to help her.

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LMom29,

When your daughter relapsed while on cyclosporin, how did you get her to remission? Did you increase the cyclosporin's dosage till she attained remission? Also, did the frequency of relapses reduced drastically immediately after she put on cyclosporin or was is a steady decrease in relapse?

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When our daughter relapsed the first time after being put on cyclosporine it was about 11 months later.
(but we had gradually reduced her cyclo dose to 50 mg daily--too low doseage--a mistake, we found out.) The relapse was treated with prednisone as always, but she was also left on the cyclosporine--about 200 mg. After that, we maintained her for almost a year on 100 mg cyclosporine before prednisone was needed again for a relapse. Over the next 14 years, it seems that relapses gradually became less frequent until we had one four year remission from relapse. That's when she had to be taken off the cyclosporine.
Cellcept was started, and the doseage of it was increased several times to try to bring remission( but that was unsuccessful). Finally prednisone had to be given along with the Cellcept.
Since August 2008 she has not had a relapse, and has remained on a maintenance dose of Cellcept; 250 mg AM+500 mg PM, but also Cozaar (blood pressure med also used for nephrotic syndrome)

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I probably should have said that our daughter also began nephrotic syndrome at age 2 and was on almost constant prednisone for relapses. A trial of Leukeran (chlorambucil) did not help at about age 8 and the relapses were still very close together until the cyclosporine was started at age 12. So, cyclosporine, even with its drawbacks did keep her in longer remissions than ever before. It appears that the side effects from cyclosporine went away (increased creatinine, increased blood pressure) after taking her off cyclosporine and putting her on the Cellcept. So far, so good with Cellcept.

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thank all of you for your replies. i knew my son got steriod dependant and resistant when he was young
since getting out of the hostpital they upped the cyclo to 300 mg. now and 80mg of pred. he is trace now for 2 days. one more day and we can start to reduce pred. but it really scares me the higher dose of cyclo. his dr said he has grown out of his dosage. "(

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