steroids - kidney transplant

[Boxing]

hi all

what steroids you take and dose for your kidney transplant?

My nephrologist said if I go ahead with the transplant I will need to take steroids for life! And I know steroids long term suppresses our adrenals etc..

Thanks!

[ShyeLoverDoctor]

It depends on the center. Some transplant centers do not use steroids at all. It’s called a “steroid free protocol.“ They believe the risks outweigh the benefits. However, I read scientific medical studies online. I’m not a doctor, but I can understand them enough to see the taking steroids really lessens your chances of rejection. Most people seem to be on 5 mg. I’ve also heard of centers going to 2.5 mg after year one, or year three.

[Boxing in reply to ShyeLoverDoctor]

hi

Thanks for the response do you mean 5mg prednisolone? I worry about taking steroids because your adrenals shut down and you don’t make any cortisol naturally

[Frida2013]

I have been taking 5 mg prednisolone for12 years now.

I did ask to come off it some time ago and was told no, I tend to go with whatever the docs tell me , they know more than me that’s for sure,

[Boxing in reply to Frida2013]

Ah ok makes sense. Do they tell you to increase the dose if you become sick etc? Because my understanding was long term steroids can cause use supress our adrenal glands so our body doesn’t make cortisol naturally

[Frida2013]

I’ve never needed to increase the dose, hopefully things will continue like that, fingers crossed 🤞.

I also take 2.5 Tacrolimus and 50 mg Azathioprine.

[Boxing in reply to Frida2013]

Ok thats good then. Did they ever tell you that you would need to if sick etc?

[Winner76]

Hi ,

I’ve taken 5mg daily for the last 5 years. Steroids can affect lots of things when used long term. I was diagnosed with steroid induced diabetes 2 years after transplant and I also have Ulcerative colitis since transplant. Yes I increase my steroids when I’m sick but it doesn’t happen very often. I have all the symptoms of low cortisol but they’ve never told me it’s low .

[Boxing in reply to Winner76]

That makes sense I did think 5mg prednisolone would supress adrenals and not allow it to produce cortisol. Did they test you for low cortisol? The 5mg should be replacing it to be honest.

[Winner76 in reply to Boxing]

I’ve had it checked a few times and they’ve always said it’s fine , but what is fine to them ?

[Boxing in reply to Winner76]

Oh I see. What was the test called they did? Just cortisol 9am?

[Winner76 in reply to Boxing]

I’m not sure on the blood form it just says cortisol

[Boxing in reply to Winner76]

Ok fair enough

[KathleenMA]

I was given a high dose of steroids during surgery and was on them about 6 months post surgery (slowing weaned off) and haven't taken them since, almost 9 years post transplant. I've had issues with skin cancers and one doctor wanted me to go back on them and come off tacrolimus, but I declined, too many side effects. I'm now on tacro and sirolimus along with Cellcept.

[Boxing in reply to KathleenMA]

Thanks Kathleen! Did you have your cortisol checked when you was on steroids that long I assume your adrenals shut down how did you wake them back up?

[KathleenMA in reply to Boxing]

I was only on steroids for 6 months right after transplant. I don't remember any cortisol checks but it's been a while.

[Boxing in reply to KathleenMA]

Ah ok.. I been on steroids but high dose for 4-5 months and they checked my cortisol which my body is now not producing any so they said I have to stay on 3mg prednisolone till my adrenals wake up!

[AVReign15]

Hi,

I take 5mg a day. I have taken it for 18 years now and my kidney is still doing great!

[Boxing in reply to AVReign15]

Wow 5mg prednisolone? Do they say you have to go up on the dose if you become ill etc? My concern with long term steroid is adrenals shut down

[horsie63]

My transplant team gave me a list of meds, Prednisone is the steroid at 5mg and yes she said it was for the life of the transplant.

[Boxing in reply to horsie63]

Ah ok thanks! And do they check your cortisol levels while on this or told you to increase dose if you become unwell etc?

[horsie63 in reply to Boxing]

Not sure as I don't have a transplant yet. If the transplant center doesn't check I can have me GP do it.

[littlelinda50]

I wish I would have told the doctor who switched me from sirolimus to prednisone NO! I have had so many issues and I am only on 5 mg. I was told I could switch back to sirolimus after my incision healed from my hernias being repair and when the 3 moths came I was told by my transplant doctor no I am on prednisone for life. Now I have never heard prednisone causing your adrenal glands not to work I have Addison disease which means my only adrenal gland does not work correctly and the prednisone helps it. The thing I didn't know is prednisone can cause thyroid issues, Gerds and change the shape of your eyes which changes your vision. Plus the weight gain. As angry as I was when I was told I couldn't get off prednisone it and my tacrolimus is keeping me from rejecting my kidney so sometimes you have to take the good with the bad. One good thing about prednisone is my skin has cleared up and no more adult acne. All I can say is everyone's experience with Prednisone is different and just because it gave any of us issues does not mean it will you. Talk with your team about your concerns! Good luck and hugs

[Boxing in reply to littlelinda50]

Thanks for the response! So with your adrenal issue is that pre transplant or since you have been on pred? I assume you have to stress dose when your unwell etc?

[littlelinda50 in reply to Boxing]

I had issues with my adrenal gland before because I had poly cystic kidney disease and it effected my only adrenal gland. I am to take more prednisone if my bp drops. I am looking for a new endocrinologist because I need someone who will address my low bps and not dose me up to much on steroids. I don't want to gain any of the weight back that I lost from chemo. I still have another 20 pounds to go and it's almost impossible to loose weight on prednisone. I am lucky I didn't get the moon face as had as some. I got yelled at every time I went to see my transplant doctor about my weight to the point I was put on a weight loss pill called phentermine to help control my constant feeling hungry even after I ate which is caused from my Addison disease.

[Boxing in reply to littlelinda50]

Wow I wouldn’t think 5mg pred cause many side effects because it’s a low dose. If you have adrenal insufficiency are you allowed to exercise? Do you need to increase dose when you exercise?

[littlelinda50 in reply to Boxing]

Yes I can exercise and no I do not need to increase the dose just increase my fluid intake if I am sweating a lot or drink electrolytes.

[Boxing in reply to littlelinda50]

Oh ok that’s good. I was thinking if we on steroids we need to increase for exercise just like we do for illness etc

[horsie63 in reply to littlelinda50]

I didn't know about the thyroid...I have Graves Disease which causes hyperthyroidism, and have retina issues already. I'll ask about that.

[littlelinda50 in reply to horsie63]

I didn't know prednisone could effect the eyes tell I made a comment that my new glasses seem not strong enough and was told oh prednisone can change the shape of your eyes so that might be why they are not strong enough.

[WYOAnne NKF Ambassador]

I was originally taking 5mg Prednisone daily. After 5 years my bone density was showing osteoporosis in my hips. I was able to wean off of it, with the idea that if it changed my creatinine, I would have to restart the steroids. Here I am over 25+ years later and never had to go back on steroids. My creatinine remains stable at 0.8!

[Boxing in reply to WYOAnne]

Gosh! Glad you managed to get off of it in the end 5mg pred low dose shocked it causes side effects. Did you have to increase dose on illness etc when you was on it?

[WYOAnne NKF Ambassador in reply to Boxing]

Took a higher dose right after transplant, but then got lowered to the 5 mg.

[Boxing in reply to WYOAnne]

Ah ok and while you was on 5mg did they say you have to increase due to sickness etc?

[WYOAnne NKF Ambassador in reply to Boxing]

No, I never had to increase my dose due to illness. For the last 20 years I have not had to take any steroids for illness or surgery, etc.

[Samuri62]

5mg

[DexterLab]

My center did not use steroids, just tacro and CellCept. When I got BK, they stopped the CellCept and added 5 mg/day Prednisone. When the BK levels dropped, back onto the CellCept and off the Prednisone. 6 years into the transplant, so far so good.

[PostivelyJo]

I was on 5mg prednisone . Hated it . Took / years but finally persuaded my team to allow me to taper off . All is fine and my kidney function improved too. It can affect the adrenal gland. In some cases they stop working and you have to stay on the pred for life

Jo

[Boxing in reply to PostivelyJo]

Ok sounds good! I am 3mg pred right now to wake up the adrenals.. I believed we have to stay on a steroid while adrenals asleep!

[PostivelyJo in reply to Boxing]

Yes taper off slowly . It took me 6 months .

[Boxing in reply to PostivelyJo]

It took 6 months for your adrenals to start producing cortisol again?

[PostivelyJo in reply to Boxing]

No 6 months tapering off 5 mg of Pred. The theory being it allows them to slowly wake up. I was told there was a good chance they might not fully function and I’d be in - mg for life but thank fully it went well. Pred isn’t in all transplant protocols , once I’d learnt that I was so determined to get off it as it can have wide spread side effects .

Good luck with your transplant. What would stop you going ahead with it ?

[Boxing in reply to PostivelyJo]

Oh I see makes sense. Nothing would stop I am actually been offered a drug called Welireg/Belzutifan it’s a new drug and it meant to shrink tumors in my remaining kidney this could keep me away from transplant for a long time or I can go for transplant instead within a year or so.. I am choosing transplant route because the medications have been around a long time whereas the Belzutifan is a new drug

[Eyak1971]

Took strong steroid after transplant and been on a smaller amount since. Doctor tried to take me off when I developed avn due to steroid use. Did not work. Still on them. Steroid eye drops are also dangerous. Ended up with glaucoma due to over prescribed for eye infection. Had to take steroids when I developed gout to relieve inflammation. On allopurinol presently. Life is a bummer when you get older but at least I am getting older.

[Boxing in reply to Eyak1971]

Wow fair enough.. well I’m only 34 and I am going to need a transplant!.. did the docs say while your on steroid you need to increase dose if sick etc?

[Eyak1971 in reply to Boxing]

Never had to increase steroids for transplant. Only for inflammation for other medical issues. The best to you at 34. Your issues are definitely different. Hopefully by the time you reach my age of 76 new medically advancements will solve many of the problems that kidney patients face today. Enjoy the future it belongs to you.

[Boxing in reply to Eyak1971]

Thanks! Hopefully!

[LavenderRabbit]

With a low dose of prednisone (5mg) your adrenal glands do not shut down. Only make less. Your Adrenal Glands recover when you taper off the drug.

[Boxing in reply to LavenderRabbit]

Oh ok . I was on high dose Dexamethasone for more than 4 months. Now on Pred 3mg I am hoping my adrenals start working again my cortisol bloods came back less than 11 nomol/L.