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Hi everyone,
I have been reading posts from other "kidney" websites and some of the, shall I say, braver tx recipients, have actually gone off all of their meds without any complications or problems and against dr's advice. It seems that most of them have had their tx for 10+ yrs. I wanted to ask a question of all the tx recipients on this board- have any of you been able to go off the steroids without problems? Of course, I mean with a doctor's ok!
I am thinking about asking my doctor if my pred dose can be reduced even further from 5 mgs daily. I know-I should be satisfied with such a low dosage but I have been having some problems with the steroids as of late(in addition to earlier complications! ) and just wanted to know about you guys and your experiences with anything similar.
Don't worry-I will not abandon my medication! Thanks for any input!
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Hi, Pam, I was off steroids completely for the last 4 years of my transplant. Some units routinely take patients off of pred therapy, mine was one of them. I am pretty sure that there is research to show that there is little difference in graft survival. However, graft survival tends to be measure in the short-term rather than the long term so how good that research is for determining if there is any difference in the long term between patients who do and don't take steroids. My transplant failure was due to cyclosporine toxicity. Amanda
Amanda
You hit the nail on the head.
I am 3 yrs post transplant this last January.
I started to wean off the 5mg /day dose .
I started reducing the daily dosage by 1/2 mg each month last July
and came off totally in Jan of this year.
I had informed my neph & he consented.
His comment was that only about 10% of transplant patients
CANNOT come OFF prednisone (prednisolone for UK).
My bloodwork is just slightly BETTER than before,(Creat 1.27)
but I have less anoying little pains, my skin is improving,
I FEEL a LOT better & seem to be more alert.
I hate steroids.
I have met multiple-transplant patients that were
LONG TERM users & the regret taking it..but the damage was done.
I have been on pred for nearly 15 years now as I had a heart/lungs transplant when I was 7 (need a kidney now!!) and I'm so used to it I don't know any different! It has never occured to me to come off any of my drugs and it has never been suggested to me, interesting that some people do. Do you mean that some people with new kidneys eventually come off all their immuno-suppresants? How does that work?!
Vikki
Even with your eyes closed, may you see the light at the end of the tunnel
I've often wondered that myself. But this far out I'm very superstitious, I try not to change too much as far has me health goes.
The first successful transplants did not have immuno-sup but they were with twins. If I'm not mistaken the longest living kidney transplant was from that era, so that person is most likely not on immuno-sup (though I do not know for sure). So, I would think, being able to be off immuno-sup depends on the quality of the match.
Didn't George form the quarter century club want to visit this person? If I'm not mistaken he or she lives in VA.
I have been one of the fortunate ones who does not have too much in the way of side effects from prednisone (at least as far as I can tell). I did get cateracts early on and it was only reciently I had them removed. (Glad I waited because it is so simple now, and with the lens implants I can't tell any difference).
It would be interesting what changes I might have if I ever came off the prednisone. Espically having been on it all of my adult (and teen) life.
Thank you, everyone!!!
This topic is one I have been curious about for a long time and I am so glad you guys have some answers and experiences. Like you, Amanda, (and a lot of you) I have been on steroids since childhood and I hate them too!!! They seem to cause a lot of problems-I just wish the docs had to take them for awhile-I'll bet they wouldn't prescribe them as much!
Thanks so much for all the replies. I am certainly going to mention this issue with my doctor the next time I go for my check-up. I am kind of like you, Bill-after so many years, you find yourself hesitant to try any change in your meds since your tx has been doing fine. I have just had so many problems with Pred that I think it might be worth at least asking about reducing it.
I am also taking all of your comments with me...my doctor tends to be resistant to change but perhaps if he hears arguments from others he might at least consider it. Again, thank you-I knew I could count on the people on this board!!!
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
It is not possible to come off all your meds. as one of the other people was asking, but it is possible to stop pred. The problem with the latter is that it has some nasty long-term side effects and I think that the units that take people off of them, looked at risk vs. benefit and came to the conclusion that the risks of leaving patients on them outweighed the benefits. Amanda
It is actually possible to come off all of your meds. My unit has been doing that now for a couple of years, and they've had some completely off all meds, and some taking like one Rappamune (even though they don't really use this drug there anymore) a day. So it is possible, in a carefully controlled situation. My unit has asked if I am interested, and I haven't consented,, and am unsure.
My unit has been steroid free now for about four years. I took steroids prior to transplant for FSGS and for all the proteinurea. I had a really, really hard time on them. Regardless of the dose. Even five mg was hard on me.
I nearly ended up on them, but changed units at the last minute, when the former refused to operate. That was a blessing in disguise. For two hospitals only twenty blocks apart, it's amazing how different one can be from the other. My protocol was like Anne in VA, and I had thymo in the hospital, and then when I left I was already not taking any steroids.
It has made a huge difference in how I feel, as I do know how hard it was for me when I was on them. I feel normal now. Really.
Perhaps your doctor could look at the Rogosin Institute's website. Just google it, and you'll get it.
Just out of curiosity, what was the hospital that wanted to use the steroids?
Was it new York Hospital? I had my transplant there and I'm guessing there a large number in the area doing transplants now. I was wondering if thery are still stuck in the '70s.
When I got mine they were the only one in the greater NY/NJ area. I had to come over from NJ to get one. Also has to see my post transplant doctor there for many years after (what a pain that was).
When I got older, yet still too young to drive (did not matter because when I could drive I could not afford a car) I went my self. It was a bus, then two subways, and walk like 20 blocks. The 20 minute appoitment took all day. And it was like every month or two.
The hospital that did/does still use steroids is NYU Medical, and the one I had the transplant in was New York Presbyterian/Cornell-Weill. In relation to New York Presbyterian, but this one is the Cornell-Weill branch on East 68th street and York in Manhattan. The Rogosin Institute (for pre-transplant testing etc) and the Jack Dreyfus Institute (for post-transplant care) are now both on the same floor/building and they are on East 70th and York.
I nearly had my transplant with NYU Medical (in the 30's and 1st Avenue), but thankfully (didn't seem so at the time) my stepdad (donor) did not get along with them (their care and followup with phone calls etc was horrible!) and they refused to operate! So i googled and searched and called hospitals to find someone to operate on us. This was last July.
NYU Medical still uses steroids, and cyclo! They only use prograf for African American patients. now, not to bash them, but truly i should as I would NEVER send anyone there for anything, they were horrible, rude, incompetent, not helpful at all (like no financial meetings, people missing for consultation, etc) and their drug protocol is so outdated. I am SOO lucky I did not stick with them. The social worker, jackie, is the worst. She is terribly depressing, rude, and a drag to speak with. Yes, they are still using 70's style of treatment in many ways, and they also do not have their own blood lab there in office. you have to go to the main building to get your blood drawn and if bring it BACK five blocks to them. How ridiculous! And the waiting room, facilities are horrible, there's like no offices or waiting space. It's standing room only most of the time.
I am a super easy going gal with this stuff, but very thoroughly self-educated on all aspects (and with the help of this board) and they just wouldn't answer questions, call back and return messages, etc. And they kept dragging feet to get donors that I already had tested. They kept using my school insurance as a problem for post-transplant billing. however, as we Americans know, even if you are not on dialysis prior to transplant, as soon as you have your operation, you are covered. So their grousing made no sense to me.
New York Presbyterian, way up near George Washington Bridge, was my first choice, but they had no surgery dates, only a possible one with a reknowned doc coming from john Hopkins in August, but he still had to get his licensing change in place so they couldn't be sure how long that would take.
Oddly, the two related hospitals do not use the same drug protocol. Both have discontinued steroids, but the NY Presbyterian uses Rappamune (which Alonzo takes now) and my unit uses Prograf. My unit has found that Rappamune (which is less strong than Prograf) has not had the same success as Prograf, and that they've had some patients have rejection. Although in this research they are doing now to reduce meds, one patient i personally know is taking only ONE Rappamune in the morning and has had his kidney for like 15 years. They have taken some patients off steriods and medications even after many years on the regimen.
I would highly recommend my unit to anyone looking for better care, and for putting the patient's life style and needs (including travel to and from...they will let you go elsewhere for your testing and then get the results and keep your file up to date) first. My post-transplant nephrologist there is Dr. Choli Hartono, and the surgeon was Dr. Sandip Kapur. Dr. Stubenbord also does a lot of the transplants. The unit is Jack Dreyfus for post-transplant and Rogosin Institute for pre-transplant services. I have never, ever even once encountered one rude person, and the hospital care was beyond anything I could have imagined. They have a huge floor in the hospital, Greenberg Pavillion 2N (north) in the hospital with like 70 beds that were all full when i was there. About four nurses per room of two patients, excellent food, family can stay, etc.
I hope for everyone that they can find and have care such as I had and have.
Thank you for your detailed reply. If I'm not mistaken I had my transplant at the NYU 68th street location. Since I have not lived in the NYC area since about 1982 I can't be real sure. I do remember the hospital being rather large and impersonal, but I thought that was just NYC. I do remember sitting around and waiting a lot. I also remember when having some x-rays, ultrasound, etc after having my transplant having to go over to Cornell. It was a long trip via underground tunnels (I was 13 so I guess it was kind of cool-you had to go through the kitchen). They also had colored lines on the floor to follow to a particular department (I liked that). I was in that place for 4 weeks during my transplant.
Back then there was only one very smalll wing, so people there were nice. They only did one live doner transplant once a week (Tuesdays). The wing had a window at the end of the hall where you could see the power plant across the East River. If you streched you neck you could see the 59th street bridge (the bridge with that gondola thing). I remember the name being New Your Hosiptal and was part of the Cornell Medical center. It was a very large complex. Do I have the right place?
People like Pam and I who have had transplants for a number of years often wonder if we can get off steroids. Most of the stories I hear, like yours, are from units that get you off early. I have not heard anything about 10+ year patients comming off it sucessfully. I have, however, heard of long term patients who have come off it and lost their transplant. I should note I've only "heard" I have never seen any formal study or statistics.
If I remember right (Pam help me here), there were a few people from the quater century club (people with transplants 25+ years) who had some problems when switching from Imuran to the newer drugs. Its that stuff that scares me.
If you ever come across any info on getting off steriods after years of use or if there is some authority on the subject at your unit who would be willing to share his/her expertise, there are a big bunch of out there that would love to know.
Bill
FYI where ever it was that I got my transplant I guess they knew what they were doing, I'll be celebrating 32 years the 12th of this month.
One website I use is medscape.com. You have to register as a healthcare professional but I figure that those of us who have been through the "Renal Mill" are indeed professionals! Yes, you may have to bend the truth a little but if I remember there are catagories such as choosing between doctor, nurse or 'other.' I believe I fit the last beautifully! Anyway, you can register for the transplant page. There you will find news of latest research, studies etc. Not as good as it once was but keeps you up to date with the world of transplantation. It will also send a synopsis to your email each time there is an update.
The problem with steroids in the past was they were needed to prevent acute rejection during the first year or so post transplant. When it was attempted to remove them later it seemed the transplantee or the kidney was dependent on them and most attempts resulted in a bout of rejection.
Just a few years ago various units took part in research using Thymoglobulin or Campath. I only know about Thymo. It was used in the past as one of the drugs given during a rejection episode. The thought was, if it is given at the time of transplant, would it a] prevent acute rejection and b] would it allow steroid withdrawal. It was given by IV over a few days at transplant. The results were so good that research was discontinued and it became protocol in many centers. As with other meds each center has a slightly different approach. Some start the day before transplant and others during transplant. Some centers give some steroids for a few days; partially to reduce side effects, others do not. The drug remains in effect somewhere between six to twelve months. In some people longer. I am seventeen months out and it still has influence on me. I took steroids for six days, reducing dosage dramatically each day. I now take only 1mg Tacrolimus twice a day and 750mg cellcept twice a day. I read fairly recently that Campath has slightly better results in one study.
Again these drugs only benefit short term prevention of rejection. Long term rejection still remains a hurdle. They do allow steroid free protocol for many but they were used initially in living donation and first time transplants. I do not know if their use has expanded to cadaver recipients and repeat transplantees.
It is good to hear that some longer transplantees are having success in weaning off steroids. It is amazing that even with the advances made, there is still so far to go.
) and just wanted to know about you guys and your experiences with anything similar.
They seem to cause a lot of problems-I just wish the docs had to take them for awhile-I'll bet they wouldn't prescribe them as much!
