I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: maritza0486 on September 21, 2009, 02:18:51 PM
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I researched Prednisone and as many of us are already aware of, it is a pill that causes major depression, mood swings and a "moon face". We don't want that. I came across a new anti-inflammatory drug called Budesonide (known by the brand name Entocort) in which does not cause mood swings or "moon face". I am going to ask my doctor tomorrow about it. Just letting everyone know if they are interested in switching.
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Jenna is on a steroid-free protocol since her transplant 2 1/2 years ago and has done great. I wonder why more centers aren't doing it.
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Jenna is on a steroid-free protocol since her transplant 2 1/2 years ago and has done great. I wonder why more centers aren't doing it.
I wonder that too. Seems they are lagging behind onadvancements. But as I have found out, it is sometimes the director of the transplant program that sticks to his/her guns because that is all they know and have experience with or have had one or two bad episodes.. In my case the flu shot. For a number of years while the director was there at my center , the protocol was not to get the flu shot because he had supposedly 2 patients who went into rejection because of it shortly after getting the immuniation. :urcrazy; Now that he is gone, we are told to get the immunization.
It also makes me wonder why some centers do not do a kidney and pancreas transplant at the same time. Instead they do the kidney first and then the pancreas at a later date :urcrazy; Still do not understand their reasoning.
Anyway, maritza0486 did you get off prednisone or are you still trying to get your doctor to switch?
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Actually tomorrow I see my doctor and am going to tell him that Prednisone is not right for me and my lifestyle and that I would like to try the new medication I have researched. It's really not always their choice...we have a say in our own health as well and I choose to try a different method that wont give me mood swings or a "moon face"
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Just be prepared for your doc to be a pain in the :sir ken; about it, but don't give up. Bring your research with and ask specific questions on why (if they don't) change your med.
Good Luck tomorrow. :2thumbsup;
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I don't know much about the differences between the two protocols. I know Logan is on steroid free protocol though. I hope that if nothing else they listen to your concerns tomorrow.
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I've been on prednisone since 1982 (year of my first transplant), and I'll be the last one to sing it's praises. However, as far as mood swings, the only time it's noticeable is when my dose is being adjusted. Also, the moon face is worse for some patients than others and usually at higher doses than maintenance. I'm not saying don't question, I'm just saying that like with anything you read, question both sides, then decide what's best for you. As some have mentioned, it may. It may not be an issue anyway if your center does steroid-free. Mine does, but since this was my third transplant, I don't qualify.
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Maritza,
How did it go at the dr?
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Maritza,
How did it go at the dr?
My doctor said there is nothing he can do. It was decreased recently from 20mg to 15mg. I am very unhappy but I respect his decision. He suggested I see a psychiatrist if I feel depressed and moody but I am actually scared to do that. I don't know what to do. My mood swings are damaging my relationship with my boyfriend. Every day we have some kind of problem because of me. I always have something to say or I am always against something. This was never me before I started taking Prednisone. I am starting to think that maybe speaking with a psychiatrist is a good idea. Maybe she will be able to control my emotions. I need to. I have been trying to control them but sometimes I do not even realize that I am acting in a wrong way until I am crying and my boyfriend is angry. I realize too late and the damage has already been done. I wish there was something I can do. With my first transplant I did not take the prednisone as I should so I was not bad at all. I am starting to think that stopping it on my own would be the only solution to make me feel sane and normal again.
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There are folks much more experienced than I that may be better authorities than I, however, it would be a tragedy to risk rejection by unilaterally stopping your predisone so early in your adjustment period. Your body is getting clobbered by drugs, still healing and your are finally feeling better. But don't panic, I am assured that things will smooth out. And they are already cutting down your dose!
Do anything and everything to help your feelings of depression but give yourself the time you need to stablize.
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I say dump the boyfriend and keep the kidney.
:cheer:
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I agree with ReRun
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Hi Maritza,
I hope you do not stop the prednisone....please do not risk losing your kidney.
I was on prednisone for over 20 years starting at age 15, and the side effects did suck, especially in the beginning. I would go back on it in a heartbeat though, to have a kidney again!
For me, eating right (no salt) and exercising really, really helped with the mood swings and puffiness. I definitely had a moonface, but after my dose got down to 10mg it was not abnormal looking. No one would have guessed I was on a drug that made my face rounder than what it normally would be.
But, I do understand your concerns with that.
Also, talking a therapist did help me to accept how I was feeling and gave me the tools to cope. I don't want to sound out of line, but perhaps your boyfriend would consider talking to someone too?
It must be hard for you both.
I hope things get better for you....I wish you the best.
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I agree with everyone else. Stick with the prednisone for now. I am now on 5mg a day and the side effects are not as bad as when I was on 15mg or 30 at the beginning. And find a psychiatrist you trust -- maybe that will help too.
Sit down and have a talk with the boyfriend and make him understand what the prednisone does to you. When I get moody and pissy, instead of hubby arguing with me - because he realizes I'm being irrational - he'll leave the situation for a while until I regain my composure. He gets that there's no point in arguing with me when I'm like that because I'll go on forever! lol
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hi maritza
When i had my transplant last november, i was on a very high dose of predisone 30+ mg
and i was freaking out that would get the dreaded "moon face". im now on 5mg a day, and have been for months. and i have not developed any moon face, i think the side effects are diffrent for everyone.
I have developed mood swings and deppresion. im just dealing with it one day at a time.
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i've been on 20 mg prednisone for the past 2 weeks, i dont know whne the moon face thing is supposed to show up, but my emotions are all over the place my girlfriend read up about the drug so she understands. perhaps give your boyfriend some stuff to read about it
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Having major surgery is a traumatic event, and prednisone doesn't help. You should see a psychiatrist, because what you have been through is enough to drive anyone crazy. If you are having mental health issues, you should see a psychologist, just like if you are having kidney problems you should see a nephrologist. Take care of yourself.
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I didn't realise that prednisolone (prednisone) was known for causing depression.
I have suffered clinical depression for so many years, that I'm not sure if the prednisolone made any difference or not. However, I have been off prednisolone for some months now, and am currently having quite a bad bout of depression anyway.
Having said that, I was miserable on prednisolone and, although I would take it as directed if the neph felt it was still needed, I have to say I am very glad to be off it. Though it was 2 years before I was able to stop taking it.
Martiza, the other thing that concerns me is your mention of fights with your boyfriend. This is not unheard of or unusual, I guess, lots of people have fights. And maybe you are right when you say it is because of things that you have done or said - but only SOMETIMES, I imagine.
It takes two people to form a relationship, and two people to maintain it. I would say to stop shouldering all the blame. Sure, you need to be aware of your behaviour and comments, and try to keep them in check when you're feeling down or aggressive - BUT your boyfriend also needs to show some understanding of your situation, too, and to cut you a bit more slack than he would in a normal situation.
Since I don't know exactly what is going on, that is all I will say. But just remember that people rarely cause relationship problems on their own. It takes two. You have enough on your plate without shouldering all the blame.
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When I first got my transplant I was going crazy literally because of the prednisone and all of the side effects. I hated it so much that a lot of the time I just would not take it, or take a really small dose. It probably wasn't the smartest thing but hey, I had to keep my sanity. I am very thankful for my kidney, but I don't feel that it is worth my sanity. Luckily for me I didn't reject my kidney or have any rejection episodes.
For the puffiness I find that it helps if you massage your face... mainly your cheeks as often as possible. It does help somewhat. Also regular exercise and getting your blood flowing helps. Also don't eat salty stuff obviously...
Good luck with everything :thumbup;