About possible reduction in immunosuppressants

[salman004]

I was wondering whether recipients do really need to continue expensive medications at relatively high doses throughout their life post donation.

As you know, it is a real challenge for those without insurance (only a very minuscule in India does have one) especially in countries where income levels are relatively low.

In particular, one of the recipients I know is still continuing on the same initial doses after two years of surgery on both mycophenalte sodium (720mg + 720mg = daily 1440mg) and sirolimus (3mg daily).

His doctor suggests that he should continue with the same dose for another two years before reduction. How much true is this?

This guy can hardly afford medicines and many benefactors support him to get medicines, but given it is a daily need it is a challenge for everyone involved.

Can some doctors or even recipients who started on similar doses but reduced within an year or two throw some light on possibility of reduction in medicines! Of course, any final decision on the same would be made solely by the doctor who is treating him.

[sherri]

Salman,

I see this topic is of great concern to you. You have posted this question on the facebook group and here. Sounds like there are financial challenges faced by recipients in India since there is no formal health insurance coverage for expensive procedures like transplant. Therefore only those who are able to pay out of pocket for surgery, be lucky enough even to find a donor and then afford the immunosuppressant medications post transplant can even contemplate getting a transplant. Transplant is a treatment for end stage renal disease (ERSD) and not a cure so it is a life long treatment.

I am sure you could find a few recipients (probably on forums for those who have undergone transplant rather than donor sites) who can safely say, yes I had higher doses of immunosuppressants the first few years and now they are lower. By the same account you will find plenty of recipients who have remained on the same dose for years and it has been working for them.

I am sure you and your recipient have discussed the rationale of the medication dose with the nephrologist who is managing the patient and why the levels are where they are. If not, the patient should and be part of the decision and process. Immunosuppressant management is so very complex. Doses are generally high to start with and adjusted based on blood levels in the system. Each person metabolizes drugs differently so that is why a close watch is needed. Even when one switches to generic medication for cost effectiveness, one has to be monitored very closely. One must take into account the degree of HLA matching, history of infections, CMV status of both donor and recipient, age,and many other variables. If the patient is doing well on the present dose, the FK (level of tacro) is where it needs to be and no side effects, why would a doctor risk changing it? Granted high dose immunosuppression is not ideal since it puts the patient at risk for cancers and even kidney failure, since immune system is lowered and these drugs do get excreted in the kidneys. the balance is so tenuous. If for financial reasons the patient asks that the dose be reduced, they would have to be willing to take the consequence of losing the graft.

Sounds like there is a lot to manage. I hope you and your family receive the support both financially and emotionally to help deal with this situation. Renal disease is a chronic illness like so many other diseases and sadly does not disappear after transplant. I hope though that the transplant has given your loved one many good years free from dialysis and better quality of life.

please let us know the follow up.

all the best,

Sherri