Prednisone

[foreverthankfull26]

Hi everyone just wanted to see if anyone that was using prednisone has come off of it and has it made a difference in your test results

[WYOAnne NKF Ambassador]

After my transplant I was taking prednisone, Myfortic and Neoral. About 5 years out or so, due to a lot of bad side effects with the prednisone, the transplant team weaned me off the prednisone. For me, it had no effect what so ever on my labs. I am living well at 20 years post transplant with a creatinine of 0.9 - 1.0.

[Hidden in reply to WYOAnne]

You are so lucky. I have problems, and the team will not take me off of it.

[WYOAnne NKF Ambassador in reply to Hidden]

How long has it been since your transplant surgery? When they did take me off prednisone, it was with the understanding that if my labs changed for the worse, I would have to restart. Luckily, all went well. Did you have a living donor or a deceased donor? Mine was from a deceased donor but was a 16 year old and a 4/6 match.

Maybe you need to be further out from your transplant, and maybe it wasn't that good of a match? Just guessing here. Did they tell you why they wouldn't at least reduce the dose more?

[Hidden in reply to WYOAnne]

It has been around 3 yrs and 8 months. You are so lucky. I understand that about if the labs got worse. So happy for you. I had a living donor. I forget what type of match it was. I am only taking 5 mg, and I would love to go off of it. The team doesn't believe in taking anyone off, or lowering it. They just don't believe in it. If things get worse, I will beg to go off of it. I know it does help keep the kidney, but comes with all sorts of problems for some of us. My cousin is not on steroids, and he is fine, but who knows? Our bodies are all different. Thanks so much for your response.

[WYOAnne NKF Ambassador in reply to Hidden]

Ya, I know, everyone is different and how we react to meds, etc. There are some on this site that are like 22 years out and take NO immunosuppressants. My doctor won't let me do that, though.

Just out of curiosity, where did you have your transplant? Mine was at University of Wisconsin Transplant center in Madison.

You might, the next time you have a transplant appt., tell them you are on this site with the NKF and there are some on the site that no longer take prednisone. Maybe it won't do anything to change their minds but it's worth a try.

[Hidden in reply to WYOAnne]

22 yrs, and no immuno's? I find that hard to believe, unless they have a live donor who was a twin, I know that is acceptable. Mine was in Philadelphia Pa. Thanks. I already told them about my cousin who went to one of the best hospitals in NY. He is not on it, they just don't believe in it. We will see what happens as time goes by. Did I ask... how long ago did you have your transplant? I hope you stay well.

[WYOAnne NKF Ambassador in reply to Hidden]

I was diagnosed with CKD in 1992. I was put on the transplant list in 1998 and my transplant the following year 1999. Back then, I was only on the list for 14 months. I think it would be something like 3-5 years for my blood type. 60,000 on the UNOS list back then. Now, it's like 110,000!

[Hidden in reply to WYOAnne]

Wow! Great you were only on the list for 14 months. I hope everything goes well for you and you stay feeling good. Best wishes.

[WYOAnne NKF Ambassador in reply to Hidden]

Thanks so much! Prayers that you can get off prednisone with no effects!

[Trayaurus]

Hi, yes, i came off predisolo e and am now on dexmethazone, which has made a huge difference

[Hidden in reply to Trayaurus]

That is great. That is also a steroid, though, isn't it?

[Trayaurus in reply to Hidden]

Yes it is but its alot better

[Hidden in reply to Trayaurus]

Great!

[Dara3351]

I am on Tacrolimus and CellCept. My meds were adjusted with 10 mg of prednisone and my CellCept was reduced to two capsules twice a day. Didn’t like being on prednisone (always hungry and weight gain) and was weaned off and my CellCept is now three capsules twice a day 250 mg so basically 750 no twice a day..what is the reason the team doesn’t want to take you off the prednisone?

[Hidden in reply to Dara3351]

They just don't believe in taking anyone off. They never gave a real reason. We will see what happens as time goes by. Yes, it sure does make you hungry, but I was always hungry before.

[Dara3351 in reply to Hidden]

What other immunosuppressant drugs are you on?

[Hidden in reply to Dara3351]

Envarsus, and Mychophenolate Acid

[Dara3351 in reply to Hidden]

Envarsus is a time release of tacrolimus. I take tacrolimus 1 mg in am and 1.5 in the evening which keeps my level around 5-6. I take 750 mg of mycophenalate in am and pm. What’s the dosage of prednisone? They have to give you a reason why they have you taking prednisone! My dose was 10 mg and 500 mg of mycophenalate twice a day. Just happy I am no longer on it. Have any side effects?

[Hidden in reply to Dara3351]

Yes, I know. I couldn't take regular Tac, it made me very sick. Prednisone is 5 mg. I do have side effects, that is why I want to be off. Right now I have a stone in the transplanted kidney which I am not happy about. I do not eat anything that would cause it, and my donor does not have it, and it never ran in her family. I know that is not a side effect of the Prednisone, but I have other things going on.

[Linmari in reply to Dara3351]

I am at Mayo, three years out, my GFR is better than ever (70-80!) and that may be why they are adamant to keep prednisone! They say best long-term success with people who stay on prednisone with tacrolimus and cellcept.

[Hidden in reply to Linmari]

Wow! That is a great GFR! So, that means you are on the Prednisone? You mean Mayo Clinic?? My GFR says More than 60. That is how the labs are. It does not give a number like that. Happy yours is 70-80, that is wonderful.

[morwebber4me]

I'm 4 years out and I am still taking 5 mg of prednisone. I was always a small person but now I am as big as a house. I am always hungry and have to really watch how much I eat.

[Dara3351 in reply to morwebber4me]

When I was on prednisone (10 mg) I too was hungry..I would drink water and fight the feeling... if I had to eat I ate carrots, cucumbers, etc...stuff with very little calories...I am no longer on prednisone and I don’t have those side effects... hope that helps..

[Dara3351 in reply to morwebber4me]

You have a say with your body... my Dr wanted to put me on a new medication and I refused. Saw the side effects and said no way

[Linmari in reply to morwebber4me]

Weight and blood sugar issues for me too.

[Dara3351 in reply to Linmari]

It’s the medication that is partly responsible! Check you A1C... mine is under 5

[Hidden in reply to Linmari]

Yes, that is the Prednisone. I try to be very careful with not eating a lot of sugar.

[Hidden in reply to morwebber4me]

So sorry to hear of your weight gain. I gained a lot too, but lost it. I am very small also. I am sure I will end up putting it back on.

[Trouper]

I am at 3 months post transplant and with tacrolimus,cellcept and prednisone.. been craving always ANDDDD cant sleep at night. My mind is active till 5am in the morning and i have to wake up at 7 for work. They said sleep is essential when recovering but with this side effects idk how to reach that. Is this normal? Cant sleep, sometimes i feel depressed as well.😐

[danielleblock in reply to Trouper]

How much prednisone are you on? Hopefully they can lower it now that you are at Month 3. Have you ever spoke to them about going off of it? My team took me off after two weeks. I am on tacrolimus and myfortic. My understanding is that they were able to do this due to the heavy induction drugs they gave me in the hospital (Thymogobulin). And congrats on hitting that milestone! I just hit 3 months last week as well.

[Dara3351 in reply to Trouper]

I used the app calm and it did wonders for sleep

[danielleblock in reply to Dara3351]

I have used that app, as well as melatonin.