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!

[Parkerbarker in reply to KathleenMA]

Ink.Huh i was very ill 3 times since transplant but only once had pred increased for 2 weeks i think

[Boxing in reply to Parkerbarker]

Oh ok did they mention about adrenal not producing any cortisol and have you had any size effects from 5mg?

[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.

[Boxing in reply to WYOAnne]

Ok thanks!

[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

[PostivelyJo in reply to Boxing]

I think that’s a tough decision to make. Which side does your kidney team come down on , were they keen you try the new drug?

[Boxing in reply to PostivelyJo]

They were preferring me to try the new drug because if could delay transplant as I am 34 but I have to think about it

[PostivelyJo in reply to Boxing]

the thing about the transplant is the meds. Whilst I have few side effects I do have them and I think they compound over time. I started mine 5 years ago. I think there preference is always to delay your time in them .

Tricky though when you have a new drug as so much is unknown. Take your time . If the outcome is eventually transplant my experience has been hugely positive. You no are are in a unique headspace , you must look after your mental and physical well being .

[Boxing in reply to PostivelyJo]

I understand that’s the thing the transplant meds have been around for years so you Prett much know what you getting yourself involved with with new drugs you don’t.. that’s where I see the risk. Also transplant you just don’t know how long it will last..

[PostivelyJo in reply to Boxing]

Yes , you have to embrace uncertainty . But no one knows how long they’ve got. It pushes you into the present moment which is exhilarating

[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.

[annulla]

Prednisone 5mg. I faithfully took it daily for about 2 1/2 years. Then a couple of months ago my prescription ran out. The pharmacy contacted my doctor, but they didn’t respond and I forgot about it. I have not discussed with my doctor although I will, and I’m having no ill effects without the steroids.

[VeroBeachTransplant]

My nephrologist would disagree. I took a high level dose of prednisone for 6 months then decreased down to 5 mg for one year. After that, I have not taken any prednisone or any other steroid for 13 years now with no problems. Now you will be on anti-rejection meds for life - but those are not steroids. I would get a second opinion.

[LisaSnow]

The reason everyone seems to have been told slightly different recommendation for steroid use is multifactorial. The "center policy" is one factor, but that general policy is never fixed because more important than such standard protocol (bases on population level emperical data) is the individual patient's risk profile for potential rejections (and type of rejections).For example, if patient A received a living relative's donation that is a perfect HLA match and no prior immune factors that likely can attack the transplant, the doctor would be much more relaxed about reducing or ultimately stopping steroids than for patient B with an existing autoimmune or inflammatory disease who received a deceased donor transplant with less than perfect "numbers". Because the second patient statistically has a higher chance of rejection, and the types of rejection that are more difficult to treat. This means prevention is so much more important for patient B. Steroids may have side effects but its effectiveness in rejection prevention is indisputable.

Not knowing medical background of any other members on the forum, it is truly not "fair" nor "helpful" to decide what would be best for yourself based on treatment history of others. Only your clinician who has done a thorough evaluation of your medical history and risk profile and know the data of your future transplant organ, has the knowledge to form a treatment recommendation for you.

Uncertainty is diffult to feel comfortable with, but please be assured that whatever the treatment protocol you will be on can be modified upon experiencing unacceptable side effects. For all we know, if clinical trials are not forced to be terminated you may even be eligible for a better and more efficacious treatment by the time you need it.

[Tolmezzo in reply to LisaSnow]

That's perfect answer!

[Parkerbarker]

Im on 5 mg pred per day

[Boxing in reply to Parkerbarker]

Oh ok thanks! And does your medical team tell you to stress dose if your sick etc? Because normally 5mg pred a day causes your body to stop producing cortisol because your making it from the steroid

[John-Sammy]

In the UK . . . . . . everything is tailored to the individual ; currently, I am on: 1x5mg prednisolone daily (steroid) ~ also immunosupprestant for anti rejection : 'adoport' which is tacrolimus , accompanied by Nizatidine (other trade names ) to protect stomach .

Need to persevere with perfect explanations from your Nephrologist !! (for safety and assurance) . But I myself feel the need to check elsewhere . . . .

I have on occasions have been prescribed to increase the aforementioned steroid 4-fold because of severe joint defects I have ~ but for strictly limited periods.

[Boxing in reply to John-Sammy]

Thanks for the response! I take 3mg pred daily with food and no stomach protector.. so you have to take stomach protector with such a low dose of steroid?

[John-Sammy in reply to Boxing]

No . . . . the Nizatidine (stomach protection) is for the Tacrolimus (taken as 'Adoport' , immunossuppresant , for anti-rejection .

The stomach protection (Nazitidine) is nothing to do with the Prednisolone (in my case , anyway !)

Hope that makes sense !

[BTW ~ of my own volition (based on previous information/prescription) I am currently take 4x my normal Prednisolone, ie 4x5mg (20mg/day) for severe spine & joint anomalies! This has nothing to do with renal problems etc, although the latter does deteriorate bones, both kidney failure & dialysis]

PS >>> (for some reason my 'PS' was removed ~ I'm blowed if I'm going to write it again. . . )

THANX !

[Rocknlily]

I’ve been on Prednisone 5mg daily for life since Transplant. I have had thyroid and retina problems. Every time I asked why I have to be on it, I never get a direct answer, just some patients have to. I have to stress dose when sick or have surgeries or procedures. I’ve had to stress dose many times.

[Boxing in reply to Rocknlily]

Ok makes sense! Are you experiencing any side effects at that dose level?

[Rocknlily in reply to Boxing]

Like I said thyroid and retina problems, also, I now have Osteoporosis and am pre diabetic. I believe the prednisone contributed to all.

[7thSon]

My center tries to avoid steriods. I have not taken Prednisone for my transplant. I take Envarsus and Mycophenolate. When my BK Virus level rose, my Myco was cut in half for 2-3 weeks. BK Virus went to non-dectectable and I returned to my original Myco dose. I'm 2 years post-transplant. I was a 2/6 match with my living donor. My 4 siblings (3 different transplant centers) took prednisone as part of their regime, however, one sister was a 6/6 match and she was able to stop prednisone.

[Boxing in reply to 7thSon]

Ok thanks for the reply! If your a 5/6 match of a living donor would that mean the kidney will last a very long time such as 20-30 years?

[7thSon in reply to Boxing]

I do not know about longevity and the relationship to the quality of match. But, there are many stories out there of donated kidneys plugging along much longer than the stats I was given pre-transplant about the life expectancy of transplanted kidneys. My siblings and I have done very well (so far) with our transplants, which range from 4 months to 17 years. (That is not to say that there aren't issues with drug reactions, illnesses and the other issues that are connected to Polycystic Kidney Disease.) Good luck!

[Boxing in reply to 7thSon]

Thanks! I have two options either take a new drug that will give me some more years with my current half kidney or do a live donor transplant. As the drug is new and don’t know long term effects etc I am opting for kidney transplant now at aged 35 rather than hoping on the new drug to give me more years

[7thSon in reply to Boxing]

I don't have all the relevant facts, but at your age, that seems the best course. I hope you have great luck with the transplant and have the good fortune to double that age and more! Keep all of us posted!

[Boxing]

thanks! My aunty who is 62 opted for the new drug instead which makes sense she can gamble on the long terms affects.. at 35 I just thought being young it’s a bit risky.. and transplant I would assume is easier if your younger

[SecondChance2]

I’m just 3 months post transplant. I’m take 10 mgs of prednisone and expect (knowing what my siblings are taking one at 6 years 10 mgs and another at 2 1/2 mg at 15 years post transplant.