Prednisone... ... ...

[hyperlite]

Has anyone hear had a transplant, and been completely taken off of prednisone? I'm on 7.5 mg a day, and I think i remember my doctor saying that this would be the lowest I would get. I'm thinking about asking her if they can lower it some more, but will this just be a worthless question?

[coravh]

I have been on the steroid avoidance protocol from the beginning. I was on pred for about 10 days and that was it. I was originally on rapamune and prograf, but in January of last year we discovered that the prograf was scarring my kidney. So now I'm on rapa and myfortic. I will have had my kidney for 5 years come October and so far (knock on wood) I have had no episodes of rejection.

Cora

[st789]

Congratulation Coravh for post 5 yrs. transplant.  What is your secrect for doing so well so far?  How do you cut or find out whether your kidney is scarring from the medications.  I am 2 yrs. post kidney transplant.

I am still taking 5 mg. of prenisone a day and 100 mg of cellcepts and neorals.  I plan to gradually lower completely or cut off prenisone.  I hope transplant doctors let me do it.

[rimbo74]

With my transplant coming up, does taking the steriods make you gain a lot of weight?  I'm hoping with a new kidney my energy level will return and I can exercise.  I would think that you would lose weight, easily the first couple of weeks for not having an appetite.

[hyperlite]

Yeah I'm taking Cellcept and tacrolimus (prograff) as well.

Rimbo: Prednisone definitely made me gain weight (about 25 kgs to be exact...), but a lot of that was due to increased appetite, and lack of excercise. I'm starting to lose a bit of the weight now, but i still have pretty puffy cheeks from the prednisone. That's why I'd really like to get off of it, or at least down to as little as possible.

[keefer51]

When i had my transplant i was on Prednisone. After about a year i was able to only have to take 3.5 down from 7.5. The first six months of prednisone made me eat i put on around 15-25 lbs. Now all this was around 15 years ago. After a couple of years around 5 i think i was able to cut down all of it. At ten years because it was a perfect match my doc asked if i wanted to stop everything. She said they had found some dialysis patients with a perfect match were able to continue on with no drugs at all. She said my body was used to it by then. I still took my celcept but stopped the prednisone.

[st789]

Although, the prenisone caused my appetite to go up a lot the first year.  I ate a lot the first yr but did not gain much weight.  Now with more energy, I exercise more and eat the same and my weight kind of go down.

I am curious I do not know many in here had taking Neoral instead most take Prograft.  Why?

[Rerun]

Just remember to go off prednisone very, very, very slowly.  I recommend (from experience) reducing 1mg a month.

[KT0930]

I've been on prednisone for twenty-five years, since it was used with both of my previous transplants, and I used Imuran (azathioprine) for both, as well - yes, my first was in the days before cyclosporine, even!

Anyway, the lowest I've ever been with prednisone was 5mg, and that's when I was a teenager/young adult and weighed right around 100-115 pounds. I'm currently awaiting my third transplant and have been off all immuno-suppressants except for prednisone since January. Transplant doc and neph both told me to keep on taking the pred.

As for appetite and energy level, rimbo, at first you're on such high doses, that even I noticed a difference. Lots of energy, HUGE appetite. These will both decrease along with your dosage.

[okarol]

With my transplant coming up, does taking the steriods make you gain a lot of weight?  I'm hoping with a new kidney my energy level will return and I can exercise.  I would think that you would lose weight, easily the first couple of weeks for not having an appetite.

Jenna had prednisone for the first 3 days following the transplant, along with ATG infusion (Thymoglobulin.) She's on a steroid-free protocol. If she has trouble with her immunosuppressants there's always the possibility that they may add some, but there is no plan to use any. Here's a recent article explaining similar transplants: MEDSCAPE - Excellent Kidney-Transplant Outcomes Seen After Early Steroid Withdrawal http://www.medscape.com/viewarticle/550952

[angela515]

Same as Jenna for myself... I was on prednisone the first 3 days after transplant, but that's all because I'm on a steroid-free protocol also.

[coravh]

Congratulation Coravh for post 5 yrs. transplant.  What is your secrect for doing so well so far?  How do you cut or find out whether your kidney is scarring from the medications.  I am 2 yrs. post kidney transplant.

I am still taking 5 mg. of prenisone a day and 100 mg of cellcepts and neorals.  I plan to gradually lower completely or cut off prenisone.  I hope transplant doctors let me do it.

We found out about the problem because my creatinine jumped from my usual baseline of 1.5 to 2.5 almost over night. A biopsy was done and they determined that it was the prograf (no rejection and I also had a virus that they concluded had not attacked the kidney).

I can't say that I really have a secret. I try really hard to always take my meds on time and I make an effort to keep hydrated. I'm not always successful at drinking all the water that I should, but I keep trying. I also still tend to stick with a lower protein diet. It's not really that low, just low compared to what the average person eats. I find it helps with my cholesterol levels and I feel pretty good eating a heavier on the veggies sort of diet. Also, I'm really careful about using Purell hand sanitizer, so I rarely get sick.

I think the last part is just plain luck too.

Cora

[st789]

Yes, I also want to load up on veggie and fish.  Stress level is an important factor.  I try to make my life and my environment as simple and organize as possible.

[Falkenbach]

I am 8 weeks out from tx - I started on 30mg of prednisone a day, and it has been slowly reduced. This week I have been reduced to 10mg.

When I was on 15mg and above, my appetite was incredible. I was constantly ravenous. I did not put on much weight, only a couple of kg's. I did TRY to watch what I was eating but there were plenty of occasions where I just stuffed my face - with junk food, too!

Now I'm back to my normal weight. So yes, some people put on weight, others don't. Some put on a bit, then lose it again.

I have not gone back to exercising yet, though I was thinking I really should start tomorrow. At 8 weeks, I really don't have any excuses. I will go back to some gentle yoga and pilates tomorrow, and add some cardio in later.

[Jaybird]

I just had a transplant on the 10th of August. And I'm on a prednizone free program. They gave me some IV steriods prior to surgery and after surgery. Including some prednizone IV medication, HIGH DOSES. Then I went cold turkey on day 3. I'm only on Prograf 2mg 2x a day. and Cellcept 4 pills 2x a day.

From what i heard, you have to tell them PRIOR to your transplant that you dont want to be on prednizone.. Also you have to be a good match, and a live donor. I could be wrong, but that was my impression. So its not impossible to not take prednizone and get a transplant.

-Jaybird

[livecam]

From what i heard, you have to tell them PRIOR to your transplant that you dont want to be on prednizone.. Also you have to be a good match, and a live donor. I could be wrong, but that was my impression. So its not impossible to not take prednizone and get a transplant.

-Jaybird

You can convert to steroid free after a transplant if the TX team will allow it.  I did it.  When we get that unexpected phone call most of us aren't thinking about a drug protocol and anyhow at that time it is wise to say nothing but "yes sir" to the doctors involved!

I converted almost 2 years after my transplant.  It is not done cold turkey but by reducing Prednisone in 1mg amounts over a period of weeks until you get to zero.

[Jaybird]

Nice to learn that. Also, if there is ever a problem, they can always start you back up on it again. So if anyone can go off it, I'd recommend it too.

Jaybird

[stauffenberg]

The problem with removing prednisone from the immunosuppressive regimen is that even after a long period of stable graft function, and even with a low dose of prednisone of around 5 mg/day, there is a 25% chance that stopping prednisone medication will cause an acute rejection.  Although most incidents of acute rejection can be controlled by intensified immunosuppression for a while, they always set the gradual deterioration of the kidney on a steeper rate of decline, so a kidney which should have lasted for 10 years will usuallly, after an incident of acute rejection, last only for 7 years. 

A 25% chance is a small risk of a huge problem, while continuing to take prednisone represents a 100% certainty of several smaller problems, such as osteoporosis, high blood sugar, and cataracts.  You just have to decide what type of personality you have in making the choice to take it or not -- i.e., would you rather be safe than sorry or are you willing to gamble for perfection?  So far I am  opting for the first choice.

[angela515]

Then I went cold turkey on day 3. I'm only on Prograf 2mg 2x a day. and Cellcept 4 pills 2x a day.

Also you have to be a good match, and a live donor. I could be wrong, but that was my impression. So its not impossible to not take prednizone and get a transplant.

-Jaybird

I am also on a prednisone free protocol. I was on prednisone for the first 2 days after transplant and stopped day 3. My 2 rejection medicines are Prograf and Rapamune. Seems alot of people here are on Prograf and Cellept. Oh well, Rapamune and Prograf are working great for me, my creatnine is 0.7 and has been below 1.0 since minutes after transplant.

as for the second thing you said... you don't have to be a live donor. I got a perfect match (YAY  ) cadaver kidney. So no live donor for me. However, my surgeon told me he wanted to put me on steroid free due to my PRA being 0%.

[KT0930]

I know this isn't exactly related to the thread, but I had to share, and thought this would be as good a place as any. After more than 25 YEARS on prednisone, I'm finally being weaned (VERY slowly) off! My neph said that the surgeon will want me off it before my next transplant, and it's not really doing me any good at this point anyway. I started out at 5mg/day, and I'll go down by 1mg/day each month until I'm done. To be honest, I'm a bit scared, I don't remember what it's like to not be on prednisone!

[stauffenberg]

It is interesting that a number of transplant patients develop tolerance for their grafts over the years so that if all immunosuppressive drugs were immediately removed they would not reject their kidney, since the body's immune system has come to recognize it as part of itself.  This happens most often in highly vascularized organs, such as the liver, but it can happen in the kidney as well.  The only problem is, the only way to test whether immunoslogical tolerance has developed is to take the patient off immunosuppressives and wait to see what happens.  If the guess was wrong and the drugs were still needed, there is a massive, acute rejection, after which the kidney will never again be as healthy as before, if it can be saved at all.  Efforts are underway to develop a biochemical test for tolerance, but until then, it is better not to risk it.  The cases which have been reported have usually be found after patients ran out of money for their immunosuppressive drugs but still did not reject the graft.

[angela515]

I know this isn't exactly related to the thread, but I had to share, and thought this would be as good a place as any. After more than 25 YEARS on prednisone, I'm finally being weaned (VERY slowly) off! My neph said that the surgeon will want me off it before my next transplant, and it's not really doing me any good at this point anyway. I started out at 5mg/day, and I'll go down by 1mg/day each month until I'm done. To be honest, I'm a bit scared, I don't remember what it's like to not be on prednisone!

So happy for you.. I hate that drug. I was on it 8 years.. not nearly as long as 25 years, but it felt like a life time anyways.. 

[Falkenbach]

I'm hating it too, with a passion. It's very early days for me, I realise that, and I'm prepared to do what I must. But I hate how it makes me look. Fat-faced and lots of acne.

[KT0930]

I had chipmunk-cheeks most of my life and I had a bald spot on the back of my head shortly after I started on it, but the WORST side effect was being diagnosed with osteoperosis at 24 years old.

[angela515]

but the WORST side effect was being diagnosed with osteoperosis at 24 years old.

I agree with you on this, except I was dx'd with it at age 15-16. I was on very high doses of solumedrol (IV Prednisone) for months at a time during the first 4 years on prednisone...  and AVN... my ankles were both fused at age 15-16 due to these problems, and now it's back again in my ankles and now in my knees.