Anyone have any thoughts on being on Prednisone for life, as a second immunosuppressant medication?

[Thumperet]

I have joined as a concern spouse. My fiancé had a transplant in 2019, he has been taking his medication diligently, however, for the past 8 - 9 months he has been experiencing diarrhea, to a point where he has lost 30 lbs and continues to lose weight. Can anyone speak on the medication of Prednisone? He is on 2 immunosuppressant medications, "prednisone and Imuran" I am looking for some feed back on the prednisone, I am getting mixed reactions on this, some people say he should only be on this for a year, after a year, your body would will be immune to the new kidney and not attack it, anyone else have experiences with this medication. Opinions please.

[LisaSnow]

"after a year, your body would will be immune to the new kidney and not attack it," I am afraid this is misinformation.

Even with a living donor transplant with high HLA compability, the patient's immune system can always turn on the foreign organ even after 20 years. All medications have side effects but it is the trade off to a long survival of the transplant. Please speak with his care team about concerns regarding medications as they have all his medical data necessary to help make adjustments if appropriate.

[Thumperet in reply to LisaSnow]

Thank you. His Renal Nurse got a little defensive with me because I was asking to many questions, based on research and she didn't like that, so she is short with her answers now, and when I gave her my thoughts on the prednisone, she automatically shut me down and said, no he is on them for the rest of his life. So I am just looking for other opinions before I discuss this with his doctor. Thank you for your opinion.

[Herkidney in reply to Thumperet]

It is always good to ask questions. However, if you are asking for medical advise rather than people’s individual experiences, please make an appointment with a transplant nephrologist to seek a second opinion. I bet the majority of the folks on this forum are patients or family members of patients with no formal medical training. Furthermore, if there is someone on this forum with formal medical training, they would not render a medical opinion for someone who they have never met and whose medical records they have not reviewed.

For your peace of mind and his, find a transplant nephrologist from a different transplant program who can answer your questions for a second opinion.

As for my personal experience, I have been told these immunosuppressant medications are a “kidney lifetime” commitment. I wish you the best.

[Thumperet in reply to Herkidney]

Herkidney, thank you for your thoughts, not at all, am I looking for medical opinions, and I am sorry if that is what it sounds like. I am merely asking for other opinions based on their own experiences because this is new for us, we don't know much about having a kidney transplant, and it's comforting to know, what he is experiencing is normal, given the circumstances.

[WYOAnne NKF Ambassador]

Everyone has given you sound advice....you need to discuss your medication questions with your transplant nephrologist.If he is experiencing diarrhea from my experience it is not from prednisone. Prednisone, depending on his dose, usually causes a surge of energy, extreme hunger, bone loss and problems with sleep.

Right after my transplant I was on Myfortic, Neoral and Prednisone. Myfortic was the culprit for my extreme diarrhea. My transplant doctor reduced my dose and the problem got better. Even still, it did take me a couple of years for my body to adjust to these meds.

At the 5 year mark I developed osteopenia due to the prednisone and was weaned off of it. At 21+ years post transplant, I continue to take Myfortic and Neoral and will for the rest of my life. You have been given some misinformation if you think he only needs to take his immunosuppressants for a year! I only speak from my own experience and what I have learned from the NKF and my own nephrologist - if he stops the meds, I can almost guarantee you that he will reject his transplant. At all costs don't let that happen.

TALK to his nephrologist!!

[Thumperet]

Thank you for your thoughts, we are grasping at straws trying to figure out what would be causing the diarrhea, as it does not appear the doctor cares enough, he just said take Imodium everyday until.........well the Imodium stopped working. I will ask about the does that he is on for his myfortic. I personally don't know much about kidney transplants, that's why I signed up on this forum, to get other thoughts and opinions from those who live the experience.

[littlelinda50]

I am on prednisone got switched after my hernia repair surgery but was told I could go back on sirolimus. My transplant center doctor told me nope your on it for life. To me it is the worst drug to be on! I have so many side effects from it and now take 3 more pills because of being on it. I have never heard or been told being on it will cause rejection. I have been told its not good to be on it for more than a year. If he can switch to something different I would do that.

[Gardner-NY]

Hi Thumperet, Your spouse with the kidney transplant is very fortunate that you advocate for them. My husband had his transplant over 2.5 yrs ago and I am his wife and understand why you feel as if the nurse is not answering your questions and discounting your concerns. I strongly say to get an appointment with the same transplant kidney doctor he has seen in the past to ask these questions to . My spouse has been on the same 3 antirejection meds Cellcept, Tacrolimus and prednisone since transplant and the one that seems to have the most changes in doseage is prednisone especially after his low grade rejection 2.5 months after he had the surgery. His nephrologist works hard to keep prednisone at the lowest amount possible. I hope you are able to get an appt. very soon because it may not be the antirejection meds causing his weight loss, it could be something else. This is just my experience. Everyone is different.

[smith3]

Hi, sorry to hear that your fiancé is going through this. The one thing I would add is that transplant centers take different approaches with regard to the use of prednisone, at least with regard to the tacro (Prograf) + myfortic (Cellcept)regimen. Some centers I explored utilized prednisone for all patients for life while others adopted a “steroid-sparing” protocol, which allowed eligible patients to not have to be on prednisone for life. I can’t speak to the Imuran + prednisone regimen, but it might be worth talking to another transplant center that utilizes a steroid sparing protocol to find out if a steroid sparing protocol is available for those who are on Imuran. It could be that being on Imuran requires being on prednisone for life, or alternatively you may discover another possibility that would allow your fiancé to live without prednisone. I hope you are able to get some clarity soon.

[Okiksaints1955]

Hi Thumperet,

After a kidney transplant, there are 4 things that must align together to have an almost perfect transition to a new normal life (perfect will not happen and we cannot have a normal life - we will always be in transition mode) of a kidney transplant recipient:

1. Your body - what you have done to it from conception to now.

Ever wonder why "diabetes or cancer runs in the family" and yet not everyone in the family gets it? Why some can eat a ton and not get big or don't smoke and yet get cancer? Our body is unique to us and the make of our organs started from what we inherited from our parents, health issues we had from the time we were born, diet, exercise, lifestyle, etc.

We can not change that anymore, but we can interfere with the progression (better diet, more exercise, etc.). That is why our body will react to treatment, medicine, food, climate differently with others. Our body is unique to us - what will work for others may or may not work for us.

2. Your Nephrologist and medical team - they need to be the perfect partner who has the necessary education, experience and wisdom, who will always answer all your questions with open mind, provide you with their best service, let you know when they do not have the answer and they will get it from research or a vast network of colleagues, who are progressive and open to new developments, etc. > provide and give you advice with different options and solutions but ultimately let you make your own decision without bias.

It took me about 10 years of moving from one Nephrologist to another (about 4-5) until I found my present Nephrologist (now running 14 years). I never hesitated changing the moment I realize I am not getting my money's worth.

- This is most likely the hardest decision your spouse will make, but looks like it is needed.

3. The results of never ending tests (indicative of how the body is reacting to this new occupant) and a perpetual adjustments of medicines to control all metrics (Tacrolimus level between 5-8, Creatinine/eGFR range, etc) and bring them to the desired level.

- Your level of trust to your medical team will play an important role even when the results are not moving the needle. Remember that tests results must be seen collectively and over a series of time. It cannot be one test at one time. They need to show trend.

4. Your own readings, research (including this forum), knowledge, etc. where you can gather all the necessary information, digest them and formulate a list of questions you can ask your medical team. Remember, the more you are knowledgeable the more you know if your medical team is giving you BS or good information.

Learn and research about side effects of having a new kidney, the medicines, change in diet, exercise, lifestyle (from your medical team, research, medicines' narrative, this forum, etc.). They are a ton to list and consolidate - but not every one will be manifested (again - your body, the meds you take, your lifestyle, etc. will dictate this). But be prepared for the unexpected - both what you have listed down and sometimes a few surprises. Here are samples of side effects I have but have never read nor was I warned:

- A few days after the surgery, my balls expanded 4X (I had a scanned but no issue found, kept complaining and the nurses were laughing with me), Went away after 3 weeks. I also have diarrhea for 3 days immediately after the transplant. Also went away

- I keep getting gout attack every two weeks for 2 months, even when meds where adjusted. My nephrologist can't explain. My sister (Dr in Au) explained that my new kidney is filtering better and the two old ones were fighting it - thus manifesting in the gout attack.

- Itchy feet (both) comes and goes and only when I am about to sleep (psychosomatic?)

- My Dr sister notice on my postings on our family Viber account - 1 year apart (the last one 2 months after my transplant) that my skin and hair color has change (didn't even notice it) from "sallow" to light. She said that is the result of "blood flow improvement and toxins are lessening"

Some of the above are very personal - but for the sake of appeasing you and your spouse, I am giving them to you FOC . So - know and be prepared.

I am on prednisolone (and it is making me always hungry) but I cannot give you an advise based only on that single data point. And expert (which I am not) needs a complete set of tests results, list of medicines and other ailments/conditions to be able to give you a high level advise. But even that is best guess (I keep repeating in my responses that it is not a perfect science).

I hope I did not confuse you with my long winded response. Point is - if anyone of the 2, 3, 4 above is missing - you are not getting the best answer. So you need to make a change.

Hope this helps. Take care and be well.

[Norken]

Hi Thumperet. I've read through most of these posts and I agree with everyone that you should ask your doctor regarding persistent diarrhea (D). Myfortic and other anti-rejection medications can cause (D) but that is not always the cause. Also, persistent D will cause the lab results to be off. I suffered from persistent D for only 2 months when my doctors got very concerned because my creatinine went up and the anti-rejection medications were not able to be absorbed into my body. They took a sample of my poop and found out I had a bacterial infection. Very, very slight but enough to cause D. They put me on antibiotics for 5 days and it was gone. It's very important you tell your doctor about your partner's persistent D. Good luck and never stop asking questions.

[klb36]

i take 10 mg prednisone and 150 mg of immuran for my entire transplant 37 years now i have not had these problems i suggest they talk with doctor