I had my transplant 32 months ago and am doing fine.
I'm not happy with the short term and long term effects of taking prednisone, and would like to get off the drug. I spoke with my post-transplant nephrologist and he, as well as the clinic he is associated with, is very much against the idea.
I'm looking for a doctor who is more open to the idea of prednisone withdrawal. I live in the metropolitan NY area in northern New Jersey.
Thanks in advance.
Transplant medicine has a clinical formula that classifies patients into high- versus low- rejection risk categories. Most of the time doctors are strongly against reduction of meds or removal of steroids when patients are in the high-risk category. I would ask your doctor what factors about your situation that had him hesitate to modify your treatment. Listen and be open minded. Doctors don't give drugs with unpleasant side effects because they don't care about quality of life, but because data show the drug is worth some side effects because of its superior protection properties. Maybe you can work with your doctor to first lower the risk factors you have, before taking the risks associated with dropping the steroid?
Totally agree with LisaSnow. Your personal health matters. Then add to that the closeness of the match of your new kidney to your body. My husband's transplant falls in the average, not perfect, range. Hence, I sense my hubby will be on prednisone until his kidney ceases to function which we hope never happens. Thankfully, prednisone is prescribed in far smaller doses today than in previous years when fewer immune suppressants were available.
I've been on prednisone 5mg daily for the last 18 years. While that might seem like a lot, it's actually a very low dose when you consider some people with autoimmune diseases take up to 40mg a day. I had a really bad time while on dialysis, so I am more than willing to put up the side effects. Every single transplant doctor has told me I will never go off the pred and I have been to 8 different transplant centers because I move every few years. As LisaSnow said in her reply, these formulas are designed for individual patients with specific risk factors. Typically at 32 months you are pretty well set on your drug regime unless something changes. Sometimes tweaking your other meds, even non-transplant related, can help with the side effects. Unfortunately, the other issue is learning how to eat and getting proper types of exercise when taking pred which can have a huge impact on how severe the side effects can be. I don't mean "eat healthily and exercise", but pred definitely changes the way your body metabolizes food and how well your body can handle stress and endurance.
I know it's not what you wanted to hear. It may help to approach the docs by asking how to reduce the side effects rather than the drug itself. Or as LisaSnow suggested, what you might be able to do to lower your risk factors. The doctor's suggestion may in fact work for both.
Good Luck
Perhaps you can request or ask if the dosage can be reduced over time. You usually never get off the steriods as it is part of the immunosuppressive therapy with transplant
Some patients are weaned from prednisone soon after their transplant with no risk to their health. The open question is how risky it is to withdraw from prednisone later on. One 2010 study indicates that the risk of acute rejection increases slightly after late withdrawal, but that life expectancy--due to reduced cardiovascular risk--actually increases.
First of all if or not a patient can be withdrawn from steroid short-term after surgery is heavily dependent on that patient's individual profile. All patients are different. All donated organs are different.Secondly, cardiometabololic risk and mortality are modifiable by diet, lifestyle, and most importantly, how well people manage health and treat risk factors such as BP, lipid profile, and fitness level.
Please discuss your individual risk status with your transplant team and cardiologist if your are concerned about these matters. They know your health situation better than we do. They should be your partners in decision making.
Let's circle back. I wasn't asking the forum members for advice on whether to withdraw from prednisone, I was asking for a recommendation for a doctor for a second opinion. This seems prudent, no?
I am not suggesting do or don't withdraw from steroid. None of us can because we are not your doctors.
In a normal circumstance if a patient has doubts about physician's competency a second opinion is always warrented. However, you said "I'm looking for a doctor who is more open to the idea of prednisone withdrawal." which suggests you want off it and assume taking prednisone is "bad", which really isn't true. In fact prednisone is the recommended drug protocol in the transplant field. I think that's why you are receiving the answers that you did.
There are pluses and minuses to the use of prednisone. I'm looking for a doctor who recognizes this and is willing to discuss same openly with me.
One can always find someone to agree with your interests - especially in a profit driven medical world. Simply be mindful that transplant nephrologists have a full year of education and training above and beyond the usual nephrologist. That extra year is exclusively focused on the niche field of kidney transplantation with all its intricacies. In my view, they're super-specialists, not simply specialists. I know my hubby, who has gone through dialysis and has no interest in returning to it, would only seek opinions from a bonafide transplant nephrologist at a transplant center. Simply a suggestion.
There was an article last year in the Journal of the American Medical Association by Woodle, et al that randomized patients after kidney transplant. All patients received tacrolimus and mycophenolate and 1/2 received prednisone while the other half didn’t. There was no difference in graft survival between the two groups at median follow up of 15.9 years.
And as Perigrine noted, there is another study that showed that stopping the prednisone actually resulted in patients living longer.
I respectfully disagree with LisaSnow. As a physician myself, I find that transplant nephrologists are “cook book” doctors. They follow a protocol and don’t like to deviate and are slow to make changes. I think that more centers will eliminate steroids for kidney transplant immunosuppression, but it will take a while.
I am 8 months out from my transplant and have already discussed my desire to stop the prednisone at one year. I don’t think that you will have a problem finding a group amenable to stopping the prednisone, but you will have to call around.
You have a perfect match. So, yes, it's highly likely you, personally, will have an excellent outcome. In fact, I've run across a few folks with fantastic matches who are completely off all immunosuppressants. The study you mentioned intrigued me so I looked it up. The patients selected were low to moderate risk. The researcher, E. Steve Woodle, is a specialist in organ transplantation. Interestingly most transplant centers reacted to their colleague's report by quickly lowering prednisone requirements in their "cookbooks" to 5 mgs but not to 0 - I speculate that was due to the fact that population selected and studied was quite problem free. In the ideal world, I would really like to see this same study replicated for the same length of time but using a riskier population - those with autoimmune diseases, with less than perfect transplants, etc. I definitely do see the value of not taking prednisone. My hubby, a senior with diabetes, could benefit from not taking prednisone since it raises blood sugars which, in turn affects the cardiovascular system. But he agreed to receive a kidney with conditions and the match wasn't perfect. His team is happy if his creatinine is above normal at or below the 1.7 range. His most recent was 1.8. Yours is undoubtedly much better than that. Back in the day, my own doctor told me that a great doctor doesn't take action on one study, he waits until it's replicated two or three times and covers your situation. While I'm sure we could "find a group amenable to stopping prednisone", I'm not sure it's wise to do so since our situation wasn't addressed in the research. However, that study was tailor-made for you. I sense you will do well.
Thank you for your reply! You have obviously done your “homework “! I am also a diabetic, so that is another reason to stop the prednisone. You’re right of course about needing to see further studies, but I do think that this will be a trend.
Best wishes to your husband. He is lucky to have someone like you as his support person!
Does anyone have a link to the Woodle study?
We live in the UK and the standard pair of immunos used by my wife's transplant hospital are Tacrolimus and Micophenolate together with Prednisolone for the first 6 months or so. She was swapped off Micophenolate back to the steroid due to some cancer risk but is expected to be swapped back shortly. Her kidney match is not perfect. There are alternatives to steroids for some patients.
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