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  • I have started with transplant friends I have had my second kidney transplant for 16 years now and have been taking Neoral/cyclosporine have all of that time. I am now taking 100mg twice a day, and this is up from one-two years ago. My cyclosporine kept coming back too low. I think I was taking 125mg once a day before my doctor starting increasing my dose. I also am taking 5mg of prednisone, and 250mg twice a day of Cellcept. The biggest thing that I have problems with is tremors and depression. I know my depression start after taking the predinisone. after my first kidney in 1984. That is why when my first transplant went into rejection in 1995 I stayed on dialysis for almost three years. I was tired of the drugs and their side effects.

  • I had 2 transplants within 9 months, spent over a year on steroids and now just Neoral and Cellcept.  I will tell you that I take CoQ10, a multi vit, an omega oil supplement (all the omegas), I also have to supplement with Vit D, Calcium, Magnesium, and Zinc.  I no longer have headaches, and when I get dehydrated is when I get a headache so I have taught myself to drink 1 liter of water every 2 hours during the day.  As long as I stay hydrated, I have no muscle aches or headaches..try the supplements and lots of water to help with side effects.  

  • Hi Sarah- By 15 years I was on 5 mg prednisone EVERY OTHER DAY!!  I am surprised they still have you on a daily dose.  Ask them if they can work on changing this for you.  This makes a huge difference in the side effects.  I guess St. James is a good hospital?  Have you considered seeing another transplant nephrologist for a second opinion?  My Dr.s worked really had to balance the immuno-suppressant therapy with my symptoms and it seems to me like your body is making it clear it needs a lower dosage of something. 

  • Hi Sarah- I am wondering what your daily dose of Cyclo and Pred are? At 15 years they should be able to have you on low doses of these.  I was on all the same medications as you and my Drs. lowered the amount of Cyclo and Pred significantly by 15 years.  My transplant lasted 23.5 years.

  • I am on Cyclo, prednisone and myfortic(cellcept) for 7 years and I feel like crap all the time. I have random body pain I cannot explain, extreme fatigue, Ive had a few lesions removed that had cancer cells, I have chronic sinus issues and no sense of smell and ive suffered from chronic depression. My doctors tell me its from the meds and not much they can do.  I find it hard to cope and that it makes my depression worse and feels like a circle. But im alive right.....

  • Any new advice for Neoral caused kidney damage?

  • I am reading a lot of complaints about muscle pain. If you are also taking a statin drug to lower cholesterol make sure this Coenzyme Q10 blocker is not the culprit! I currently take 50 mg Gengraf twice a day with no problems. I have taken Cyclo, Neoral, and another generic for Neoral over the years. Whichever the lower dose seems to be the main factor in reducing side effects. I also take Myfortic twice a day and no other anti-rejection meds.
  • I have been on Neoral 125mg for 5 plus years. I also take Myfortic. I had a liver transplant in 2007. This past year I have had problems with diarrhea. My doctor put me on Welchol and that has pretty much stopped the diarrhea.  

    Has anyone in this group had any of these problems and if so what was done? Did your doctor change your meds from Neoral to some other anti-rejection meds.

    Thanks for any responses. 

  • My pain is liver pain when I try to reduce the Neoral but I will check out the fish oil info, thanks
  • Joe- I suggest you start taking fish oil for the kidney disease and pain.  See our fish oil discussions.  Also, I am surprised you are still taking immuran.  I pushed my Drs. to switch me to cellcept and it extended the life of my kidney transplant.  It is a much better drug.  My Drs. told me it would not make and difference but agreed to switch me and it slowed down the chrionic rejection.

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