2nd withdrawal of prednisone after initial Steroid avoidance protocol

Posted by jullieh @jullieh, Nov 16, 2020

I recieved a kidney transplant last Feb 2020. I was given Campath induction and on a rapid steroid taper and off prednisone by 4 days post. I had no issue with rejection. I had to restart prednisone in May because I had BK virus and they had to lower my other meds so low. Now my other meds are back up to normal doses. I'm wondering if anyone has gone back off prednisone in this situation. My home doctor thinks I shouldn't but my Mayo doctor says I can go off. I'm nervous and can't find any literature to support the decision making in this situation.

@julieh Welcome to Mayo Connect! Congratulations on your recent transplant!

I would follow the recommendations of your transplant team. You mentioned a Mayo doctor – is that where you were transplanted? They are probably following you for this first year post-transplant, and remember you will have an annual evaluation for the transplant. It seems there are differing protocols at different transplant centers.
Ginger

REPLY

I am not a medical person, but i did receive a heart transplant 17 years ago. I was on prednisone for close to a year – not a great experience. I have never had a rejection episode.
I think going off prednisone 4 days post is way to early. But i would follow advice of doctors.

REPLY
@gingerw

@julieh Welcome to Mayo Connect! Congratulations on your recent transplant!

I would follow the recommendations of your transplant team. You mentioned a Mayo doctor – is that where you were transplanted? They are probably following you for this first year post-transplant, and remember you will have an annual evaluation for the transplant. It seems there are differing protocols at different transplant centers.
Ginger

Jump to this post

Yes, I was transplanted at Mayo Phoenix. The tricky part is I live in Vegas. When I had my last video appointment with Mayo they recommend reducing and then discontinuing prednisone but also defer to my home nephrologist for the final decision. The home nephrologist doesn't like steroid avoidance protocols, but will likely make it my decision and ok it if i oush to follow the Mayo recommendation. Meanwhile my Vegas transplant nephrologist will be managing most of my care. I just have one more mayo appointment at 12 months post and then see them only yearly. I'm just hoping to hear from anyone who may have had this unusual situation where steroids were stopped, started and stopped again successfully. If I could find even one study I'd feel more confident!

REPLY

Hi, @jullieh. I am extending a virtual handshake to welcome you to Mayo Connect. I am happy to hear that have received a kidney transplant and are on the road to your new normal!
In 2009, I received a liver and kidney at Mayo in Rochester. Like you, I was tapered off the high post surgery dose of prednisone in a matter of weeks. However I continued to take a daily 10 mg prednisone pill for around 5 years because the research (at that time) and my health called for it. My labs, and other immunosuppressant medications were relatively stable throughout those years. Then, at one of my annual visits to Mayo, my transplant team said that I could get of the prednisone. I would not have expected 10 mg to be a difficult amount to withdraw from. I had some bothersome side effects and needed some of my other meds adjusted along the way. My primary care doctor who is nearby helped me with my taper. I have been off prednisone for probably 5 years now.

Like, you, I am at a distance from my transplant team – 756 miles to be exact from my home in Kentucky to Rochester MN. I return annually for my checkups, and all other care is provided under the guidance of my primary care doctor, who is willing to coordinate with Mayo. I continue to have my routine labs drawn per my schedule, and both my primary care doctor and Mayo get the results. Here is an article that you might like to read. Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-physicians-and-local-physicians-a-partnership-to-provide-best-care-to-every-patient/
@jullieh, Have you asked your doctors their reasons for and against continuing the prednisone? It is always okay to find out the benefits or risks involved.

REPLY
@azdan99

I am not a medical person, but i did receive a heart transplant 17 years ago. I was on prednisone for close to a year – not a great experience. I have never had a rejection episode.
I think going off prednisone 4 days post is way to early. But i would follow advice of doctors.

Jump to this post

There are quite a few centers that do the rapid prednisone taper now. They give another drug (there are a few different ones) at the time of transplant, it's called an induction, which reduces the immune system significantly and lasts for 6-12 months. It allows for the rapid withdrawal of the steroids right after transplant. My issue is I did great with this, I had no rejection but had to go on prednisone for another reason and now, at 9 months post transplant, they are not sure if they should take me off prednisone again or not.

REPLY
@jullieh

There are quite a few centers that do the rapid prednisone taper now. They give another drug (there are a few different ones) at the time of transplant, it's called an induction, which reduces the immune system significantly and lasts for 6-12 months. It allows for the rapid withdrawal of the steroids right after transplant. My issue is I did great with this, I had no rejection but had to go on prednisone for another reason and now, at 9 months post transplant, they are not sure if they should take me off prednisone again or not.

Jump to this post

@jullieh A taper off prednisone with followup on your bloodwork, to monitor you, may be the only way you'll know. What have your Dr's said the reason for the prednisone at this time is? My husband was put on prednisone some time after his transplant, because his white blood cell count went too low, and remains on a low dose. They decreased his dosage of microphenolate, but kept the tacrolimus dose the same. It is always a balancing act with medications, and how your labs are telling the inside story to the medical professionals.
Ginger

Liked by jullieh

REPLY

I'm only still on the prednisone because they had my Mycophenolate so low. As they increased the mycophenolate they reduced the prednisone. My blood work had been awesome, Creatinine 0.76 and GFR 93 last week and have been few of BK since July. What would you think is see in bloodwork that might alert me to a problem with prednisone withdrawal? Would I just see creatinine go up indicating possible rejection?

REPLY
@rosemarya

Hi, @jullieh. I am extending a virtual handshake to welcome you to Mayo Connect. I am happy to hear that have received a kidney transplant and are on the road to your new normal!
In 2009, I received a liver and kidney at Mayo in Rochester. Like you, I was tapered off the high post surgery dose of prednisone in a matter of weeks. However I continued to take a daily 10 mg prednisone pill for around 5 years because the research (at that time) and my health called for it. My labs, and other immunosuppressant medications were relatively stable throughout those years. Then, at one of my annual visits to Mayo, my transplant team said that I could get of the prednisone. I would not have expected 10 mg to be a difficult amount to withdraw from. I had some bothersome side effects and needed some of my other meds adjusted along the way. My primary care doctor who is nearby helped me with my taper. I have been off prednisone for probably 5 years now.

Like, you, I am at a distance from my transplant team – 756 miles to be exact from my home in Kentucky to Rochester MN. I return annually for my checkups, and all other care is provided under the guidance of my primary care doctor, who is willing to coordinate with Mayo. I continue to have my routine labs drawn per my schedule, and both my primary care doctor and Mayo get the results. Here is an article that you might like to read. Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-physicians-and-local-physicians-a-partnership-to-provide-best-care-to-every-patient/
@jullieh, Have you asked your doctors their reasons for and against continuing the prednisone? It is always okay to find out the benefits or risks involved.

Jump to this post

Thank you for the link and your story, that is helpful! Mayo said i could try to go at and said "we will see how it goes." he said there is not a lot of data regarding being off prednisone then back on, and then how successful it is getting off again during the first year. In theory i still have some of my induction agent in my system until around 12 months, so that could still have some protection against rejection. My Vegas Nephrologist said that when he was at John's Hopkins for his training they found that the steroid withdrawal was causing increased rejection. They were using a different induction agent than i had though. They chose this induction agent on purpose to be able to get me off the steroid. I think that because of the off, on, and now possible off again situation, they just can't say how much of an increase I risk of rejection I have, because it had not been studied. So they each have their own ideas and previous patient experiences that they base their recommendations on. I'm happy to hear your success story though, thanks for sharing! ❤️

REPLY
Please login or register to post a reply.