I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: donnia on March 28, 2009, 04:00:43 PM
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Well... thank God they are tapering me off the Prednisone. I have already alternated 10 and 5 mg for 2 weeks, then 5mg for 2 weeks, now I am alternating 5 and 0. On April 1st I will officially be off. I have heard that it can be very difficult being weaned off, but I have not really had any problems. The only thing I have noticed is that I am retaining a little more fluid in the leg opposite of my transplant side.
For those of you who have been weaned off Prednisone... what have you experienced?
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I was on Prednisone one other time other than now and I had no problems coming off. At that time I wasn't weaned off the same way you are being weaned off, nor am I being weaned off that way this time. I'm currently at 10 mg and I drop to 9 mg April 1st. I will go down 1 mg a month until I hit 5 mg. At that time he'll assess me and then hopefully continue at 1 mg a month I suspect.
If you aren't experiencing any problems now, I doubt you will. Congratulations! I know you're excited to come off of the Prednisone. Have you been able to lose all your transplant weight? If so, at what mg of Prednisone did you start noticing the moonface and weight starting to come off?
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Good for you, thats one more move in the right direction. :grouphug; As for the swelling, I can't help you.
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It's been ten years for me and they never weaned me off. Why is that? I thought you had to be on prednisone forever. I have been on five mg for years now. ???
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My post transplant doctor told me that they are finding out that Prednisone isn't alway necessary. He said there are some hospitals that are advertising "steroid free" transplants.
However, I believe it depends on your match and such. How close of a match is the kidney, live/cadaveric, etc. My doctor plans on taking me off totally, but there is always the possibility that he won't be able to. I'm praying I can be steroid free by the end of the year.
Did you get a live donor?
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I have read some of the papers available on the web about this. What I am finding is pointing towards successes with prednisone avoidance or rapid discontinuation (over a week or so), but still some questions about the risks associated with a taper that occurs later (prednisone withdrawal). I guess this means that the longer you stay on prednisone, the more difficult it is to come off. But, the docs have all the latest info accessible, which tends not to be on the web. It sounds great and I wish my husband had the option.
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Yeah, "steroid free" probably means what you just said. You're on it for a week or so and then tapered off. I think Gail was like that. ???
My older friend who transplant about a month after me (he's 75) was tapered off much faster than me due to his calcium levels or something. By the time I hit 20 mg, he was right behind me. I can't remember how fast he was coming off. Maybe 2.5 mg a week. ??? I was doing 2.5 mg every other week and then sometimes 3 weeks.
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My husband is getting close to his 1 year anniversary and he is still on prednisone. I am not sure of the dose, and he is off on a trip again. I think it's still at least 5 mg a day. What's your dose right now Kellyt?
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No, my kidney was not from a live donor. Maybe that has something to do with it? I'll be sure to ask the docs when I go for my pre transplant workup over Spring Break. Maybe things have changed since getting my kidney ten years ago.
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Beth, I think it might have something to do with it, because at my last doctor visit my doctor said "You got a living donor, right?" He then confirmed the match (3/6). He then went on to say that his plan is to take me off. Ask your doctor anyway. Who knows, right?
Pleagia, I have finally hit 10 mg, but I drop to 9 mg on April 1st. Down 1 mg a month until I hit 5 mg. Then he will make his decision. He's pretty confindent I can come off of it, but if I have to stay at 5 mg then I have to stay at 5 mg. It will be August when I hit 5 mg and I transplanted in Nov of last year, so I'll be almost at 1 year. Even if we do taper down from 5 mg I go over my 1 year anniversary. Let me know what dosage your husband's on. Also, did he get a living donor?
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i had a living donor and im down to 5mg twice a day..tx coordinator told me i would be on it for ever...am going for yr check-up next week going to ask why that i will be on it....just curious why i will be on it :stressed;
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What is the match of your living donor, Chris? Mine was a 3/6.
I wish I had asked my doctor more questions when he said all this to me. I was just so darn excited to possibly not be on it forever I just screamed "Great!" Everything else he said after that was lost. I see him on the 7th. I'll ask again.
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will be going for 1 yr check -up next Monday April,6 will ask then, i think it was 5/6 match if i remember correctly.
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That's a really good match! Good for you! Ask your doctor and let me know what he says. Because I'm at 10 mg now and I transplanted way after you. I drop to 9 mg on Wed. Surely you won't stay at 10 mg forever. ??? Let me know. You got me curious now. Good Luck at your 1 year visit. I hope everything is perfect!
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I know some centers are totally against coming completely off. My friend had her tx 4 years ago from Baylor and is still on 5mg. I had a live donor (as did she) that was a 3 out of 6 match. My center likes to take you off at a year but since I am having my hip surgery on April 28th and they will have to be messing with my Rapamune, they went ahead and started tapering me off early (with no complaints from me whatsoever lol).
What are prednisone withdrawal symptoms....? I have not heard of this?!?!!??
:basket:
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Prednisone withdrawal symptoms involve EXTREME bone pain and muscle pain.
I was on prednisone for aprox 8 months for treatment for Goodpasture's Disease (an autoimmune disease damaging kidneys or lungs). My highest dose was 80 mg/day tapered to zero at about 8 months. The extent of withdrawal symptoms has something to do with how long you were on it and at what dose. Maybe you won't get withdrawals at all if you've been on a low dose for a short period of time.
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I was back to 5 mg within a week, but will be on 5mg forever. I've been on that low dose for at least the past 20 years and a bit higher (like 10mg) for the 5 years before that. We don't seem to do totally steroid free here.
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I had rejection issues at first so I started at 150 mg a day. It's been 5 months, I am now on 7.5 a day hoping to move down to 5 soon!
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What are prednisone withdrawal symptoms....? I have not heard of this?!?!!??
My understanding is that prednisone more or less shuts off your adrenal gland among other side effects. See for example:
http://en.wikipedia.org/wiki/Prednisone (http://en.wikipedia.org/wiki/Prednisone)
My husband's neph once mentioned the possibility of going on an alternating day on/day off dose. I thought that sounded strange, but the wiki article mentions that therapy as something that helps to preserve adrenal function.
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Whoo-Hoo! I drop to 9 mg tomorrow! I'm sure the weight will just fall off!!! ::)
If it doesn't (and I know it won't immediately), I might not make it through the Texas summer! It's only March and I'm sweating like a "bad girl" in church.
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I had a live donor transplant in May 2007. I am in my early 30s.
I started on 30 mg a day, and it was weaned down bit by bit over the months. I am down to 1 mg a day. I still have moon face, although everyone tells me it isn't that bad and that I grossly exaggerate it. Apparently it was much worse 12 months ago, but I'm very sensitive about it. I am hoping to be off prednisone all together in a few months' time.
I have had no side effects. After my transplant I did suffer dreadful bone pain, but it appeared to have been in relation to my Cyclosporin (which was changed to sirolimus early on) and hyperparathyroidism. This problem eventually settled down some months after I had a parathyroidectomy (about September 2008).
As prednison is known for causing osteoporosis (which I already had, pre transplant) and diabetes (which runs in my family), I really cannot get off this drug quick enough. I despise the stuff.
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My husband has 2/6 match. He is in his early 50s. At 11 months post transplant he is on a prednisone dose of 7.5 and 5 mg on alternating days. He expects to have his dose dropped again as soon as he hits the one year mark.
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I asked the Dr about the prednisone protocol after transplant and she said they didnt have good results with" steroid free" transplant ,as they taken patients off of it they had rejection episodes and had to continue with prednisone therefore everyone takes it @ the clinic. Also was told i was a 5/6 match and that didnt have anything to do with if i take prednisone or not.... God Bless !!! Chris
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Did she mean "they" as in "their clinic/hospital" didn't have good results or "they" as in "the medical world"?
I really hope that I'm able to come off 100%. My guess is once I hit 5 mg I'll be there for a while and the decrease (if any) will be extremely slow.
However, now that I think about it, as of tomorrow I'm switching back to my regular nephrologist and will only be seen at the transplant clinic once a year. They said that from now on my regular neph will be in charge of my medication dosing, increase/decrease, refills, etc. He might not take me off. ??? I still hope he does, but I'll deal with it if he doesn't.
We just want to keep out kidneys, right Chris73? :2thumbsup;
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sorry for misunderstanding it was @ Virginia Commonwealth University its was their protocol for everyone to take prednisone.. and yes that is a small price to pay to be dialysis free and to keep our kidneys functioning ....Chris....kellyt hope your neph can get you off of prednisone
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I'm on 10mg aday , thats the lowest i will go as i am high risk , so i'll take the moon face so i can pee ;D
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I saw my regular nephrologist today and he said he would try to get me off the Prednisone, but ti will take a while. I'm fine with that. I also told him I understood if he wanted me to stay on a low dose permanently.
I do, however, get to stop the Bactim and Valcyte next month! Yeah! Two meds gone! :clap;
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I
I do, however, get to stop the Bactim and Valcyte next month! Yeah! Two meds gone! :clap;
I have just stopped those two as well :clap;
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keeping the kidney... :thumbup;
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Ah yes, Bactrim and Valcyte. I was glad to get rid of those as well. They kept putting me back on Valcyte, as I kept showing possible CMV in my bloods for a while there apparently. I went into hospital for a week with a nasty gastro bug a few months after transplant, but until they confirmed it was gastro (that took absolute days of testing and re-testing), they treated me for CMV. Anyway, all was well in the long run.
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I do, however, get to stop the Bactim and Valcyte next month! Yeah! Two meds gone! :clap;
Ok, since DH had his transplant (LRD, 2/6) about fifteen years ago, I can tell you the protocols from back then...
As of last year, when the transplant began to fail, he was on 7.5 mg pred daily, as well as Bactrim. His immunos were Neoral and Cellcept. (And after a couple of hospital visits overhearing nurses, I learned that the Neoral was "the old kind", whatever that means :) ) I remember his nephrologist being startled by this, and remarking that the surgeon in their practice "usually" had people off prednisone within a year. We got very excited at the prospect and asked if he could get his drug regimen reviewed - but by then his labs weren't doing great and we got an indulgent chuckle at that suggestion.
After our hospital excitement last summer, after they declared the transplant kaput, they tapered him off all the mentioned drugs. I don't recall the taper schedule for pred, I think the immunos were half right away and stopped completely after about a month.
He went through horrible, horrible bone pain for about a week, and that was a 2-4 weeks after stopping the pred, if I recall correctly. It's hard to say whether that was withdrawal, as he had many festive things happening at the time.
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Apparently the Bactrim and the Valcyte I'll just stop. He said don't refill them. The Prednisone is coming down 1 mg/month currently. It sounds like when I reach 5 mg I'll stay there for a few months and he'll watch my labs closely. The I'll probably go down .5 mg or so a month. ??? Not 100% sure after 5 mg.
When I came off the Prednisone years ago after being diagnosed I had no problems at all. No bone pain or anything. I'm hoping for the same result this time.
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(And after a couple of hospital visits overhearing nurses, I learned that the Neoral was "the old kind", whatever that means :) )
I only had my transplant in 2007, and I was also put on Neoral and Cellcept, so I don't know what "the old kind" means either. Due to a lot of side effects, I was taken off Neoral and placed on Rapamune in its place.
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Ah yes, Bactrim and Valcyte. I was glad to get rid of those as well. They kept putting me back on Valcyte, as I kept showing possible CMV in my bloods for a while there apparently. I went into hospital for a week with a nasty gastro bug a few months after transplant, but until they confirmed it was gastro (that took absolute days of testing and re-testing), they treated me for CMV. Anyway, all was well in the long run.
What is CMV? I'm also currently on Bactrim (1/day) and Valcyte (Mon/Wed/Fri). Is the CMV the cause of these medications?
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I stopped Valcyte for about three weeks...then in this latest round of test they found CMV in my blood so Valcyte is back in my regimen. I figure, when you're taking a handful what's one mroe. I was down to 7.5 of prednisone a day, but for the past three days I have had IV's of 500 mg per day...so now we start the taper again.
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CMV is cytomegalovirus, something that once you are exposed to, you carry it for life. A large number of the population carries it without knowing it, it doesn't really affect the average person. But it can be very serious indeed to a transplant patient.
Valcyte is the medicine used to prevent any possible CMV infection post-transplant. I think Bactrim is to prevent a number of infections but, I was told, particularly lung infections.
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Here is a link to a relatively recent IHD thread on CMV:
http://ihatedialysis.com/forum/index.php?topic=8934.0 (http://ihatedialysis.com/forum/index.php?topic=8934.0)
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I have tapered down to 1 tablet/day of Prednisone since May 16th. I don't go back to the transplant clinic until June 29th. Will I have to stay on 1 tablet/day for the rest of my life or will they stop the Prednisone? I know some post transplant patient don't even take steroids as part of their anti rejection med. I'm hoping to be off the Prednisone since I hear so many bad things about it if used for a long period of time.
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I have tapered down to 1 tablet/day of Prednisone since May 16th. I don't go back to the transplant clinic until June 29th. Will I have to stay on 1 tablet/day for the rest of my life or will they stop the Prednisone? I know some post transplant patient don't even take steroids as part of their anti rejection med. I'm hoping to be off the Prednisone since I hear so many bad things about it if used for a long period of time.
OK. According to my clinic visit this past Monday, I was told by my Dr. that I will remain on 5mg 1 tablet per day for the rest of my life. This is because of the antibodies/high PRA. So that answered my question.
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Again, I was on 10mg for 17 years and they tried to take me off too fast and I was so sick. I would jerk when falling asleep, bad dreams, stiffness, no appetite. I was experiencing adrenal failure.
Your adrenal gland produces 8.5mg of cortisone normally, and when you are on prednisone for so many years your adrenal gland goes to sleep and has to wake up and start working again.
For long term prednisone the general rule is 1mg per month.
I'm still on 2mg a day just because I like the stuff. I'm as limber as a 10 year old well, ok a 30 year old.
:yahoo;
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Ha! Good for you, Rerun! I used to be extremely limber. I need to start stretching again.
I dropped to 6 mg today! One more mg gone! Slow and steady wins this race! :rofl;
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I've been on 1 mg for several months now, and I asked if I could come off prednisolone all together. My neph said that I could, but as my Sirolimus level is slightly low, I have to increase Sirolimus to 4 mg for a week first, then I can come off the prednisolone all together.
Oh yay!
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It's always something, right?
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Yep, but I'm happy with that arrangement :yahoo;
I am off the prednisolone now, as of a week ago. I believe my moon face has already come down a bit.
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My transplant was July 13th and I started on 25mg. I have come down 5 and now 2.5 each week. I am now at 15mg daily. I asked about coming off completely and was told NO. I will stay at 5mg for the life of the transplant. They said it was due to rejection issues after being tapered off. My transplant was a 5/6 cadaveric donor. :waiting; I am happy to do as I am told as long as my kidney is happy. :)
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That's the same protocol I'm on Wattle, been taking 5mg daily for many many years and I don't seem to have any major trouble.