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My son is 7 years now - 5 years into transplant. His recent biopsy showed lot of infalmmantion in his kidney and he ws immediately started on 7 days of Thymoglobulin treatment. HE is on his 3rd day right now. His creatinine was fine before so this biopsy results are totally unexpected.

He was on just tacrolimus for 3 years ,since other meds caused him to have GI complications. But in the last 6 months he is on progarf, cellcept and steroids. But docs still think he is not immune suppressed enough and thats why the  acute rejection. Am feeling clueless with all of this ? Anyone had any experience like this in pediatric ( mainly ) or adult pls ......

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  • When they put him on the CellCept and prednisone. Did they adjust the prograf level. I just from my experiences I've had a couple of kidney transplants. So some of these meds were not around back then. And it seems to me that sells up is very toxic it causes me problems at super low levels. They caused me so much nerve damage with that drug I am permanently disabled.

    • No Prograf here is why. This is from my own lengthy reaserch.TAC increased by 22.1% (322.4 ± 174.1 to 393.6 ± 121.7 ng·h/mL; P < 0.05) when co-administered with MMF, whereas the pharmacokinetic parameters of MPA and its metabolites were not changed by TAC. Apparent clearance 

      • Look at his Prograf level before MMF and after. High levels of Prograf can damage the kidney. This is why I take Belatcept infusions( every 28 days) as my main med. Plus 5mg of presiosone and 250mg of MMF 2X daily.

    • Thanks Melissa... Did you mean cellcept?

  • The use of thyroglobulin is to knock down levels of antibodies that may be attacking your son's Tx. It is used more often shortly after a Tx, but at times, to quell acute rejection episodes.  I had to have it after my 2nd Tx, after keeping a kidney for thirteen years. A determination will be made after the course of IV's are completed to judge what level of immunosuppression is required. 

    This is a lot for a young man to deal with (know that blood tests reveal rejection long before the recipient ever feels anything)  and I pray for the very best results of the treatment.  I hope he will enjoy many, many years in good health. I also hope you are blessed with the strength to overcome this ordeal.

    • Thanks for replying ...what was the reason for the acute rejection ? For him it s because his immune suppression was not enough but all his labs have been within range

      • For me, having lived with a Tx for so long, my body had antibodies protecting the first Tx, that increased when the new organ was implanted. This was while I was recovering in the hospital from that op.  After four treatments, I was able to leave there within a week and blood work revealed the level of antibodies had dropped enough. I do still do periodic antibody- specific blood tests, but the levels never elevated thereafter. It's been almost four years now.

        The first step is to quell the ramping up of antibody production. The next phase will be to increase suppression, possibly requiring a medication change. As unnerving as this process is. have faith in the team to resolve the issue. Know that better days are ahead, which you should focus on, and not the immediate journey your son is on.

        Life with a Tx can be a roller coaster, with each challenge surpassed, both you and your son will gain the emotional strength to face the next "bump" in the road. Try to limit your concern to issues you actually can control, and leave the rest to the team. 

        • Thanks you actually read my mind... One day he is actively playing and tell next he is hospital for a week... I am not sure when you got your first transplant but he got his from me when he was 2 and now he is going to be 7.

          Just the Thymoglobulin effects and being in a bubble for 3 months after this scares me....yes you are right they are going to be changing meds after this..

          Long story short his body was never completely in tune with imuran,sirolimus and he stayed on only tacro and his blood levels were ok for the late 3 years. His last 2 biopsies are showing more and more inflammation and his nephrologist team thinks that his immune suppression has not been enough for his body and it needs to be increased from now on with steroid s also in the mix....

          • Perhaps they will add Prednisone, a drug can have horrid side effects, but with maintenance doses of 10 mg or less (likely,) will stem the tide, with minimal effects.

            Just when you think you see the light in the tunnel, you should prepare yourself for the somewhat distant future(late teens,) when there is a real possibility that your son may need another Tx. By then you'll be more concerned with who he hangs out with or dates, and what he's doing. Oh to dream...

  • Hi Sun

    I just answered your other post. I am sorry your Son is going through so much right now. 

    Sending you hugs

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