Prednisone

[ksoccer45]

Hi out there! Does everyone take prednisone? I take it everyday 5 MG per day. Suppose to all my life. Just curious if anyone has heard of any success of someone not taking medications everyday or stopping prednisone all together?? That would be the dream.

[jodaer]

Hi again, I'm surprised that you are so tired what with taking pred. Why are you taking it? I would be very careful if you decide to stop taking it. One must be weened off it slowly.

[ksoccer45 in reply to jodaer]

I take it as an anti Inflammatory for my kidney transplant. Yes I'll be careful and won't ever stop cold turkey

[metalminded]

I take 2.5mg daily and from what I’ve been told by my transplant doctors is no, I’ll never come off it because it’s part of my anti-rejection medications. I’d love to come off it too.

[ksoccer45 in reply to metalminded]

Thank you for your response. How long have you been doing 2.5mg? I would love to drop down to 2.5 instead of 5mg a day

[metalminded in reply to ksoccer45]

I’ve been on 2.5mg for the last 6 years

[miraclelady]

I've been on 5 mg daily for almost 28 years now. I was told I would never get off of it as it is part of my anti-rejection regimen. I, too, would love to get down to 2.5 mg, but I just keeping doing as my Nephrologist says! Have a blessed day!

[Highgfr in reply to miraclelady]

Recently, I am being evaluated to see if I qualify to be on a transplant list and one of the medicines they say you have to take is prednisone. And it starts with a high dose. Have you been on a low dose all along or were you started at a higher dose. Any side effects? Any better ?

Thank you so very much. Trying to find out more about this medication, prednisone, and any help or info on how it goes with the all medicines after a transplant... side effects and limitations. Have so much to learn.

[miraclelady in reply to Highgfr]

They started me on higher doses right after transplant and got me down to 7.5 mg pretty quickly. Then, finally down to 5 mg. To be honest, with the higher doses, I did have a couple of broken bones which could have been from the Prednisone, so we came down to the lowest dose we could, 5 mg, at that point. No other side effects other than the Prednisone face! However, you have to have a few side effects to get the wonderful results!!! I am blessed through it all.

[Highgfr in reply to miraclelady]

Oh no...broken bones? So very, truly sorry. Bless your heart. How long were you on the high dose of prednisone? And I'm sorry but what is a prednisone face? Sounds terrible. How long are you post transplant now? Thank you.

[miraclelady in reply to Highgfr]

October will be 28 years!! My face is just rounder at my cheeks. I can't remember how long I was on the high doses. Best wishes to you!

[Denise-80]

Hi - I switched meds in March of this year and they added 10 mg/d prednisone to the regime which “they promised” to switch to 5 mg/d in 3-6 months. The reason I was given for the prednisone is that the sirolimus and belatacept I’m taking now are so “gentle” that the prednisone is also needed for anti-rejection. (Nothing we take is gentle!)

Prior to March and back to 2014, I was not required to take prednisone while taking tacrolimus and MMF.

I’m glad to hear 2.5 mg/d might be an option one day.

[Highgfr in reply to Denise-80]

Bless your heart. Hope the prednisone works well for you with no side effects. Recently, I am being evaluated to see if I qualify to be on a transplant list and one of the medicines they say you have to take is prednisone. Trying my best to find out how well it is or is not tolerated.

How did you do with the meds after transplant? Was it really hard or kind of easy to manage?

Thank you so very much.

[Darlenia]

My hubby, too, takes 5 mg of Prednisone to prevent transplant rejection.

[Futureckd]

Hi, when I was diagnosed with ckd due to vasculitis more than a year ago, the local nephrologist put me on 60mg prednisone per day !!! And for several months. It was horrible by all it means as I got all the bad side effects from moon face to induced diabetes such that I had to take 2 insulin shots per day and measure glucose in blood in finger 3 times a day for months. In addition I had to be on diabetic diet. The most difficult diet in my opinion. The sad part was that despite the monthly local blood tests I did and some was of several pages, my local nephrologist did not realize that my blood glucose was at the roof until I went to Mayo Clinic for a second opinion on my ckd. There, the Mayo nephrologist sent me to the emergency room because my blood glucose was above the maximum of level. So the test result was glucose was larger than 500. When I Google it, I learned that one of a well known side effects of prednisone if taken in large doses and for several weeks or months is the induced diabetes! It is a text book side effect. Even there is a special type of insulin that I took for this induced diabetes which I started in Mayo Clinic right away. Then the nephrologist in Mayo tapered it down to 40 mg per day , then 30 mg per day, 20, 15, 10, 7.5, then 5. The Mayo nephrologist said that recent research indicated that high dose of prednisone is not needed to suppress inflammation and lower doses will do the same job, given the terrible side effects it causes. This is the advantage to see nephrologist familiar with recent research in nephrology. I stayed on 5mg per day for almost a year and recently the Mayo nephrologist asked me to taper it to 4, 3, 2, 1 and then stop. Each reduced dose is for 2 weeks. Now I finished the 3 mg per day and will start the 2 mg dose. Luckily, although was not guaranteed at all, my induced diabetes went away gradually with tapering the dose and I am grateful that it is all gone now with the 5mg dose I was for several months. This is my experience with prednisone, hope it helped.

[jodaer in reply to Futureckd]

WOW, so sorry you had to go through that. Glad you found help before it was too late.

[Futureckd in reply to jodaer]

Thank you. I hope everyone on prednisone for long time to watch for the glucose level in blood. You can buy a cheap device from Walmart and check it out on regular basis using your finger.

[Highgfr in reply to Futureckd]

Thank you so much for sharing your story with me. You have really been through it. Bless your heart. Happy for you that the diabetes is now back to normal. Did you have any issues with broken bones or swelling from the prednisone and what is moon face? Does it also go away? Thank you again so very much.... this is all so helpful to learn and helps so much to understand.🙏

[Futureckd in reply to Highgfr]

I just saw your reply. Hope not late. No I did not have broken bones but my face was swelling , all of it, that what they call moon face. And yes it also went away with reducing the prednisone dose. I am now on 2 mg per day this week and then will go to 1mg and then stop the prednisone. One doctor explained to me that prednisone , although all it’s bad side effects, is like a water to put on fire when a patient has inflammation and the doctor does not know where exactly in the body or what is causing the inflammation. So it helps in that regard.

[allene7]

I was taking a small does of prednisone for years before being diagnosed with kidney disease. I took it for Rheumatoid Arthritis start with 5mg every day, then 5mg every other day, but about a month ago was taken off completely by Ra doctor because I've recently had to start taking a Prolia shot for Osteoporosis. The doctor gradually took me off no side effects but then again 5mg is a very low dose. I hope you too can at some point not have to take prednisone but not for my reason. Good luck. Have you spoke with your doctor about it?

[Highgfr in reply to allene7]

So glad you were able to get off of it and thank you so much for sharing... It really helps! Have asked the dr about it but when they say everyone is different it really doesn't answer the question. So, asking others has been such a blessing to gather more insight and the fact that other have gone through it and to hear their story really helps and gives more insight. Thank you.

[allene7 in reply to Highgfr]

I sure hope they get it figured out for you. True everyone is different and your doctor should be working with you to figure things out. Sometimes we have to continually ask questions.

[Highgfr in reply to allene7]

Thank you again, you are so right. Thank you or such great advice! Take care and I pray you have continued blessings.

[RoxanneKidney]

ask for Plaquenil instead. It is used for lupus. and supposed to be pretty safe.

[Highgfr in reply to RoxanneKidney]

Thank you so much... I will ask about it. Bless you!

[WildIris]

I have lupus and take 5 mg prednisone. When I try to reduce prednisone, hemolytic anemia (my main lupus effect) comes back and I have to go back through the high dose prednisone ordeal. Plaquenil was zero help and made my hair fall out, I stopped it (and felt better) then had to switch doctors and find a rheumatologist who wouldn't insist on it.

[Highgfr in reply to WildIris]

Bless your heart...thank you for sharing.

[RoxanneKidney in reply to WildIris]

We are all wired a little differently. Just like the ACEs don't make me cough, but the ARBs do. I have a friend who has lupus and that is what he is on and it works fine for him as I am sure it does for many others; however, if the prednisone isn't working, there is no harm in trying something else, is there? We all are on the quest to get the right mix, it seems.

[Highgfr in reply to RoxanneKidney]

Good point. Thank you so much!!

[TopazForests]

I'm on 10mg of Cortef (a steriod not as strong as prednisone) twice a day for my adrenal insufficiency. I don't have any side effects from it and it does not increase my blood sugar readings. When there is a reason for me to have prednisone, I have insulin that I can take if needed. I have to check my blood sugars before meals and if the level is over 150, I take insulin on a sliding scale to keep it in check. A few months ago, my pain specialist gave me a steriod shot in my hip and about 4 hours later, I had blood sugar over 400. My primary care doc called in a prescription for the insulin and I just needed it for 2 days and then my levels stayed down on their own. If you have diabetes, always talk to your doc about any steriod treatment because high blood sugar is a common side effect and can cause major health problems.

[Highgfr in reply to TopazForests]

Thank you for sharing. So sorry if affected your blood sugar so much. As a diabetic I have great concern about taking prednisone after transplant and am praying there is a good alternative to it. Thanks for sharing the other med with me. I will ask about it, definitely. Did prednisone cause you any other side effects, bone problems, nausea, irritability? And people say something called moon face?? Thank you again!

[TopazForests in reply to Highgfr]

No, I haven't taken prendisone except for shots in joints for pain management and then tablets when I have bronchitis. I do have the high blood sugar every time I take it but no other side effects.

[Highgfr]

So sorry you are experiencing side effects from prednisone. Recently, I am being evaluated to see if I qualify to be on a transplant list and one of the medicines they say you have to take is prednisone. And it starts with a high dose. Have you been on a low dose all along or were you started at a higher dose. Any side effects? Any better ? Thank you so very much.