| Author |
Message |
yvonne
Member
Username: Yvonnehall123
Post Number: 2
Registered: 01-2010
| | Posted on Sunday, January 24, 2010 - 05:28 pm: | 
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Hello My name is Yvonne Im a 27 yr old Single mom . I recieved a Kidney Transplant 8mths ago. I started out on 90mg of PRED because my Kidney was not responding in the beginning I experienced all the side effects of PRED such as Large appetite, rapid weight Gain, Moon face and etc. Sense then I have been tapered down to 10mgs and I dont feel any better Im extremely concerned about my Mood Swings. One minute Im happy the next min Im Sad or laughing then Crying. Im extremely Depressed these days and Im making myself and everyone else around me miserable Before the Transplant I was Fun Outgoing and Exciting! Now I have low self esteem, and low confidence due to my body changes. I just want to be off these steroids..Can someone out there tell me if they have experienced the same thing or If they know someone else who does? Need Answers Thanks
Yvonne
Kidney Transplant 05-03-09
University of Wisconsin
Madison, Wi |
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CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 3079
Registered: 03-2008
| | Posted on Sunday, January 24, 2010 - 05:59 pm: |
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Yvonne, although I did not experience all of those things, I did have the appetite thing, weight gain and some problems with mood swings (mostly anger problems) Maybe what you need to do is to try to get with your post transplant coordinator and let them know what is going on and ask them for some help. This is not uncommon, by any means, including depression, problems with esteem. Good luck!!!
| There are not too many things in life worth working my butt off for, but my health is one of them |
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yvonne
Member
Username: Yvonnehall123
Post Number: 3
Registered: 01-2010
| | Posted on Sunday, January 24, 2010 - 08:10 pm: |
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Thanks! Gregg I really appreciate your feedback. I do have an upcoming appt to meet with my Transplant Team, so these are tings I will discuss. Thanks again!
Yvonne
Kidney Transplant 05-03-09
University of Wisconsin
Madison, Wi |
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Andrea
Member
Username: Andrea88
Post Number: 75
Registered: 12-2009
| | Posted on Sunday, January 24, 2010 - 08:59 pm: |
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Hi Yvonne.
Pred did all this weird stuff with me, specially emotionally. But as they decreased the doses, i have been much better.
Im pretty sure that your Transplant team will figure something out to help you.
Hope everything comes out good and you feel way better
andrea
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yvonne
Member
Username: Yvonnehall123
Post Number: 4
Registered: 01-2010
| | Posted on Sunday, January 24, 2010 - 09:53 pm: |
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Thanks I really appreciate your kind words!
Yvonne
Kidney Transplant 05-03-09
University of Wisconsin
Madison, Wi |
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Morley905
Member
Username: Morley905
Post Number: 28
Registered: 07-2009
| | Posted on Monday, January 25, 2010 - 09:19 pm: |
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Yvonne, you'll probably here from many people here about the mood swings. As my transplant co-ordinator put it...it's like 24hr PMS. I haven't experienced the weight gain or the moon face, but I have the increased appetite and mood swings...grrrrr! i guess it's something we all have to put up with. However, I sure don't miss the dialysis, daily injections, glucose testing swings.
-Type 1 diabetic more than 30yrs
-double below knee amputation 2006
-pd dialysis 5 yrs
-kidney/pancreas transplant Aug 7, 2008
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John M
Member
Username: Jam1107
Post Number: 65
Registered: 12-2006
| | Posted on Tuesday, January 26, 2010 - 02:00 pm: |
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Yvonne,
I currently take 5mg Prednisone a day, and don't notice any serious side effects at that dose. I occasionally have skin blemishes, but discovered Dial anti-bacterial bar soap clears them up, so I use that daily.
My highest dose was 20mg -- and I was bouncing off the walls at that dose (like the Energizer bunny -- couldn't sit still) -- can't imagine what 90mg feels like.
Definitely speak to your transplant team...
Wishing you the best,
John
Pancreas alone transplant 4/13/04; rejected 2/07; removed 5/31/07.
Second pancreas transplant received 11/11/08.
NY Presbyterian/Cornell Medical Center, NY |
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yvonne
Member
Username: Yvonnehall123
Post Number: 7
Registered: 01-2010
| | Posted on Tuesday, January 26, 2010 - 05:37 pm: |
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Hey Jim I was on 90mg Im down to about 10mg but I feel worse at 10mg than I did at 90mg..I actually have an appt in the morning hopefully they will taper me down a little....
Yvonne
Kidney Transplant 05-03-09
University of Wisconsin
Madison, Wi |
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CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 3091
Registered: 03-2008
| | Posted on Tuesday, January 26, 2010 - 06:03 pm: |
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I was on 80mg in the hospital right after my transplant. When I went home, it became 20mg. It has been scaled back to 2.5mg currently.
| There are not too many things in life worth working my butt off for, but my health is one of them |
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Imzadi
Member
Username: Robing
Post Number: 35
Registered: 04-2009
| | Posted on Tuesday, January 26, 2010 - 07:05 pm: |
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I have been on preds for 32 years now and I have been through all the things you mentioned (10mg daily with the rest of my breakfast pills, well that's what I call them). The weight will go down and you will get shape back. Before my transplant I was 8st/112 pounds in the winter and 111.5 pounds in the summer regular as clockwork for six years. After the op I shot up to 15st/210 pounds, round moon face etc. The weight then came to less than 140 pounds, I was just under that when I married in 1986. Now the old middle age spread is here but I at I am here to get it!
I went through the depressive swings from (and still do) from time to time, but I get through them, I have a good wife who understands.
There is no real advice that I can give you but these things happen on and off. But I try to enjoy a part of each day, the rain, snow and sun, the up days and the down days, I am here to enjoy them.
Every day is a blessing
Every year is a miricle
Kidney Transplant September 1977 |
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Meagan
Forum Leader
Username: Newheart14
Post Number: 777
Registered: 01-2009
| | Posted on Tuesday, January 26, 2010 - 08:02 pm: |
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Hi Yvonne and welcome even if I'm a bit late.
I didn't have a kidney transplant, I had a heart and liver transplant, but we all take basically the same meds. I am currently at 2.5 mg but recently I was bumped up for 10 days and also had a cortisone shot in my back. What I experience from high doses of steroids is not bad moods but the opposite. I get really happy and clownish.I also have a bit of chubbiness on my face. I always had a very slim face before. I have also put on some weight but I'm not going to blame the steroids because I have been pretty sedentary for the last couple of months due to a herniated disk. I hope to get serious before summer and really make an effort to lose this weight.
I hope you feel better soon.
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Terri
Member
Username: Terri
Post Number: 162
Registered: 09-2007
| | Posted on Wednesday, January 27, 2010 - 12:09 am: |
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Yvonne, I had my transplant when I was 13. I remember the high doses of Prednisone well. I had all those symptoms you listed. I gained a lot of weight (no one believes this) and I was crazy with the mood swings. Like you said I would be happy as can be one minute and balling the next. I would get mad and not even know why. I couldn't stop eating either. I wish I had advice on how to deal with all this but I never figured out how to deal with it when I went through with it. It got better when they lowered the dose.
Terri - Because I CAN
Liver Transplant July 2, 1991 |
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Aussie Ian
Member
Username: Aussie_ian
Post Number: 6
Registered: 10-2008
| | Posted on Wednesday, January 27, 2010 - 06:37 am: |
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Hi Yvonne,
Looks like everybody gets the pred blues every now and then, my thoughts on the matter vary slightly from what has been said in this discussion as well as others.
I was on 30mg straight after the operation, and now 16 months later have just dropped down to 5 mg a day. What I noticed in your post is you are 8 months out, and have gone from 90mg down to 10. I noticed I had most problems when they dropped the dosage, and my was done at a much slower taper than what you have experienced. I did not have any of the 'classic symptoms for 5 months, when I was dropped down to 15 mgs, then the appetite went sky high, the weight went on, skin blemishes (acne) and the thing I get is very heavy sweating.
I (try) to play golf, and notice walking the first hole almost requires a shirt change - I am seeing a chiropracter / acupuncturist who diagnosed (from my pulse) that I have an overheated liver - go figure
Anyway - back to my point - I feel that my (and many others ) problems are caused by the too fast reduction of the medication. I am noticing that some side effects are reducing (I have finally started losing some weight 3 kgs since Christmas) and other issues are diminishing. The body relies on the drugs, and when they are withdrawn or reduced, it tries to compensate, by storing up fats etc.
My Doctor has told me that I will (probably) be taking 5mg pred for the rest of my life - thats fine by me if that is what it takes. I still take 1000mg of cellcept 2x a day , 2 mg prograf Am & 1 mg prograf PM. reading through the posts - the drug vary as much as we human beings do.
My suggestion, for what its worth, and reduction in pred should be in 1 mg amounts, and do this after a month, then reduce this again after a month by another 1mg.
AND LISTEN TO YOU SPECIALISTS - the name says it all!!!
Hope all go well and things settle down for you
Ian
PS - Are all you up there in the USA freezing - today in Sydney it was 31C - in your old terms we are talking about 90 degrees - Sunny, clear Blue skies. |
rahlisha
Member
Username: Rahlisha
Post Number: 2
Registered: 01-2010
| | Posted on Sunday, January 31, 2010 - 12:33 am: |
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I am not sure I can add anything to these great posts. It sure seems like most of the side effects drop off around 5 mg - where I am at. I easily forget that prednisone affects moods. I read somewhere that Russel Crowe has a brooding personality. I can really relate to that sometimes... but maybe its just prednisone stoking my anger. |
yvonne
Member
Username: Yvonnehall123
Post Number: 8
Registered: 01-2010
| | Posted on Monday, February 01, 2010 - 11:58 pm: |
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I'm so very Thankful to all of you for the awesome advice and wonderful support, I am happy to report on my last Doctor's appt..I was dropped down to 5mgs of Pred..wish me luck God Bless you all!
Yvonne
Kidney Transplant 05-03-09
University of Wisconsin
Madison, Wi |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4024
Registered: 07-2007
| | Posted on Wednesday, February 03, 2010 - 03:19 pm: |
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Yvonne:
I call Prednisone the Love/Hate drug. It certainly is a miracle drug, but it has lots of awful side effects. It sounds like you have experienced most all of them. I am sorry about that. I have been on and off Pred most of my life. Each time it does weird things to me. I have really never experienced the mood swings, but I get the moon face, and it has really done a number on my bones. I have have had osteoporisis since I was in my 20's. I don't really get the appetite increase, but I do get the swelling and weight gain if I don't watch my salt intake. I also get skin blemishes and extra hair growth (I get a mustache - yuck!) I notice that I bruise easier too. So far I have not experienced insomnia which I am thankful for.
You might not be feeling so good right now because you were tapered from 90mg to 10mg. It takes some people awhile to adjust to the loss of cortisone in their system. It might takes weeks for you to get used to the lower doses. Give it some time. I know it's frustrating, but I think you will start to feel better soon!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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John83
Member
Username: John83
Post Number: 7
Registered: 10-2007
| | Posted on Wednesday, February 03, 2010 - 05:42 pm: |
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I was on the steroids for the best part of 12 years and went off them two years ago against medical advice which I don't recommend but I do pushing your doctor to reduce the dose as much as possible, I was worried about bone loss and I had a scan in october which revealed I had osteopenia in my spine. They don't tell you that they can cause bone problems because they don't want you to stop taking it but I don't think you actually need coricosteroids they just add them for good measure because they lower your immune system (if you take them long enough) |
Steve D
Member
Username: Steve_d
Post Number: 31
Registered: 10-2009
| | Posted on Wednesday, February 03, 2010 - 11:17 pm: |
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I hate that drug and jumped off of it after 5 days twice. I'm sorry you are going through this.
They don't tell you about the other 50 or so possible side effects. Your body makes it naturally
until you take it chemically that is.
<crying>
hang in there
I'm sure it works for some people, it is not for me.
hope everyone has been well, I have been away.
All is still good in my world 4 months and counting this weekend!
Steve |
kristi
Member
Username: Kristi
Post Number: 2
Registered: 02-2010
| | Posted on Thursday, February 04, 2010 - 02:04 am: |
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I am a 33 year old kidney transplant patient. I received my kidney transplant on Dec. 14, 2009. I left the hospital on Cellcept, Valcyte, Prograf, and Septra. My WBC dropped and they reduced my Cellcept by 75% and put me on a small amount of predisone. I told my dr. I didn't want to take it bc of weight gain and he told me that it has been researched and post transplant patients do not get weight gain. I honestly don't know since I have only been on it now for 2 weeks but I am a very active person so I am not sure I would notice it anyways.
As for the depression...I can totally relate. The emotional roller coaster you go thru is normal. Let's face it, anyone who has been on dialysis or in ESRD has been knocking at death's door and that is super scary. I was very unsure about how I felt about getting a transplant bc I was so used to being on PD. My catheter had become my security blanket and that was being taken away.
You are going thru a lot of changes. You defeated death by receiving a new organ and are going to once again live life like a normal person other than taking pills a couple of times a day. I am not saying I don't have bad days but let's face it...we have been given the best gift we could have ever received...a new chance at life.
If you need someone to talk to...don't hesitate. |
Starzl1971tx
Member
Username: Starzl1971tx
Post Number: 15
Registered: 01-2010
| | Posted on Thursday, February 04, 2010 - 06:12 pm: |
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My Main Point: Get off pred if you can!
Someone mentioned that pred has 50 or so side effects. Take that statement very seriously. Although I feel healthy in general, and strong, after 38 years on pred, I have had hyperthyroid, bone necrosis (not just ostopenia), diabetes 2, etc.
The thyroid is controlled, but did you know that years after having hyperthyroid your eyes can still be affected to a very striking degree? It is called post-thyroid syndrome. Look it up for some ugly pictures. Can be surgically corrected, which I have had done.
This may seem like the most petty side effect of all, but, guys and girls, if you stay on pred, you will have spotted lizard skin. That bothers me most of all.
Men may be able to ignore red spots, squamous cell carcinoma, warts that stack up like little pyramids or tents, pre-cancerous actinosis (sp?), but, girls, bad skin is the worst thing of all. Hands, scalp, forehead, sides of cheeks, sides of neck, sides of body, forearms, backs of arms... shoulders.. not much left, is there?
Right now, for some reason, an itchy rash with raised bumps has broken out. What causes it? All together now: It's the pred! Standard answer. I am down to 6 mg per day... aiming for 5... and maybe that will help.
When I went on pred in 1971, there was little knowledge about the side effects of long term dosage. But, there is no excuse now for keeping people on large doses of pred or on a pred program for a long time. Surely there is something else that those of you who are just beginning can take.
Kidney failure 1970; dialysis Jan 1971 through April 1971, Baptist Hospital, Memphis, TN; kidney transplant 4/30/1971, Colorado General, Denver, CO. Hurray! Back to work in August 1971. Life is wonderful.
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kristi
Member
Username: Kristi
Post Number: 5
Registered: 02-2010
| | Posted on Thursday, February 04, 2010 - 07:22 pm: |
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They had to put me on 5mg of Pred bc they had to reduce my dosage of Cellcept bc my WBC was so low and my immune system was compromised. They said if my immune system dropped any lower they would take me off the Valcyte but only as a last resort bc my mom tested positive for CMV and I tested negative not to mention the PCP we could contract bc of a lowered immune system. Lifelink normally doesn't put any of it's transplant patients on Pred unless situations like this occur. My Dr. has assured me once my WBC goes up he will take me off. All I had heard was the weight gain side effects and although that sounds vain I am a 33 yr old competitive cyclist and a marathon runner so I work hard to keep my body healthy and in shape.
Thank you for the additional info on the side effects of Predisone. Btw...I had also heard it makes you very emotional and irritable. Has anyone experienced those symptoms? |
Martin
Member
Username: Martinlross
Post Number: 3
Registered: 02-2010
| | Posted on Thursday, March 25, 2010 - 02:06 am: |
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I'm a 38 yr old acute case which ended in ESRF last August. Do not despair!!!
I was on 60mg prednisolone for weeks. It wasn't pleasant. It was difficult to separate out the actual illness I was having from the side effects but looking at other posts and recalling how I felt at the time I can now see just how much an effect it had on me.
Yes I was emotional, I was depressed, I had a moonface, I had a buffalo hump at the back of my neck ;), my skin was awful, I bruised with the best of them and the bruises lasted for weeks and my hair changed texture (wierd). Coming off was even worse and my moods took a real dip for about a week - I couldn't face work.
However, the good news is that all that is past. More importantly, the reason for the drug being given to me was a severe inflammation in the kidneys - this was controlled by the drug and eventually removed.
Don't give up and remember you are not suffering alone.
Martin |
ashley
Member
Username: Ashley
Post Number: 1
Registered: 03-2010
| | Posted on Monday, March 29, 2010 - 07:57 am: |
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7.5 mg steroid
side effect: losing my hair like crazy, got moon face, hump at the back of my neck, gain 20 kilos, sweating mad, and depressed 24/7 |
Rita
Forum Leader
Username: Rita
Post Number: 85
Registered: 06-2003
| | Posted on Monday, March 29, 2010 - 10:39 pm: |
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Yes I agree prednisone can be your best friend and at the same time you can hate it too. There are many different side effects to the drugs we take to help us. My strong opinion is to not take yourself off any drugs, Always discuss your drugs and side effects with your doctors and list the concerns you have with them. Usually the meds dose is lowered as time goes by.
Yvonne, Please discuss with your doctor that you are not feeling better. You have had a lot of changes in your life--getting a transplant and even good things can be stressful. I do think your body is adjusting to the meds, change in meds. When I was on high and then put to lower levels of prednisone I did not have cheerful thoughts all the times and sometimes I thought I would be on the cover of the New York Post for some of the things I though. LOL. I can tell you in time you do become yourself again as your body adjusts to the lower level of the meds. I do agree that there are side effects with the meds being on them for years, as I have and do experience them, however I choose to take thoses side effects to keep my transplanted kidney. I have been on 7.5 mg of prednisone for about 13 years now. Please keep us posted on how you are doing. Rita
Rita
Kidney Transplant 9/95
New York City |
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Rita
Forum Leader
Username: Rita
Post Number: 86
Registered: 06-2003
| | Posted on Monday, March 29, 2010 - 10:56 pm: |
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Hi Ashley, Welcome to this site. You will find lots of support on this website. There are lots of lovely people here. If you dont mind me asking what kind of transplant do you have and how long have you had your transplant?
Rita
Kidney Transplant 9/95
New York City |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4275
Registered: 07-2007
| | Posted on Wednesday, March 31, 2010 - 09:50 pm: |
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Ashley:
Welcome to Transplant Buddies! Yes - steroids can be a love/hate drug. The side effects can really be bothersome for some people. I have dealt with them on and off all of my life. Now that I am post transplant I am on them indefinitely. There is no magic bullet to dealing with the side effects. Just know that you are not alone in your frustration.
I hope you continue to visit. We look forward to getting to know you!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Malcolm Inverness SCOTLAND
Member
Username: Malmorrison
Post Number: 1
Registered: 04-2010
| | Posted on Sunday, April 04, 2010 - 03:41 pm: |
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Hello Everyone,
I was on High dose Prednisolone post transplant and it was horrible at first emotions up and down do not get swings that often now that I am on 2mg daily 8mnths post transplant face didnt swell up but I ate like a horse and still do to some extent :D
Prograf has been reduced a lot too 2mg twice daily still get slight tremor in hands when handwriting so I do no t bother now, I use computer:D
Things do tend to settle down after a few months and your nephrologist reduce your meds you will feel much better.
kind regards and best wishes to everyone.
malmorrison |
roger
Member
Username: Rojjarz
Post Number: 7
Registered: 02-2008
| | Posted on Tuesday, August 24, 2010 - 01:34 am: |
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hi everyone I am Rohan 4Yrs Post kidney transplant . I am experiencing serious development of cataracts in eyes. am right now on 05Mgs of Pred. post transplant Recently noticed heavy blood passing in my stool. Other side effects include some mood swings (Anger)
Thanks |
James
Member
Username: Jamie52
Post Number: 3
Registered: 09-2010
| | Posted on Friday, September 10, 2010 - 02:03 pm: |
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Rohan,
You need to see your doctor immediately. Passing blood is a HEAVY warning sign of something going on. I notice that you posted on 8/24 and I hope you have found a resolution to this by now.
Take care,
James |
Carl
Member
Username: Carlbullen
Post Number: 4
Registered: 01-2012
| | Posted on Monday, January 02, 2012 - 07:58 pm: |
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Just to support a couple of comments above.
I've been on 20mg pred for three months. Hurt my eyes and made my hands seriously shaky but most of the emotional issues where the other way: super elated, manic, very busy, not sleeping.
I recently reduced my pred cos of a chest infection (not recommended to reduce on your own in retrospect, as I did) and felt the worst depression I've ever felt. This is apparently called adrenal insufficiency - your adrenala have stopped producing vital hormones, and so hence the withdrawal. You might be experiencing this,rather than direct from the pred - in which case time will heal.
One other thing, you might want to discuss "alternative day dosing" with ur docs. Apparently can reduce side effects without lowering graft survival:
http://www.ncbi.nlm.nih.gov/pubmed/6753268/
http://www.ncbi.nlm.nih.gov/pubmed/8560569
Two studies here claiming it reduces side effects like osteoporosis, growth stunting and infections, while having no effect upon kidney survival.
All the best,
Carl. |
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