I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Rerun on January 26, 2006, 10:00:59 PM
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I was on 10mg of prednisone daily for over 17 years. I started dialysis again on September 5, 2005. In October they started weaning me off the anti-rejection drugs. My prednisone went from 10mg to 7.5 to 5 to 2.5. My last dose was January 15.
I have been SO ill since the end of December. Diarrhea, joint pain, muscle pain, no energy, low grade fever of 100.4, cough, no appetite.
They have done stool cultures, urine cultures (I squeezed some out), blood cultures, X-rays of my abdomen, ultrasound of my dead kidney. All show up negative for problems.
Is there such a thing as "Prednisone Withdrawal"? I can't find anything on the internet. I'm so tired of feeling like CRAP!
I feel crappy after dialysis, but was usually able to bounce back the next day.
Any ideas? ???
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I wish we had more members who have had transplants that could answer this question for you sorry, I will ask around.
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I think I have this figured out. I was on 10mg Prednisone for 17+ years. Your adrenal gland makes 7.5 on its own. They slowly weaned me off but NOT slowly enough for my adrenal gland to wake-up. :P
I was on 7.5mg for three weeks, then 5mg for three weeks and 2.5 for three weeks then zero as of January 15. I started getting sick around Christmas. I was up in Spokane and my legs were just rubber..... "Muscle weakness". I couldn't find anything on the Internet about Prednisone withdrawal........ dha it is a STEROID. I looked up "steroid withdrawal" and it looks pretty much like what I have.
I mentioned it to my Dr..... KIDNEY SPECIALIST, and she said "it certainly could be". But, she is still thinking my kidney needs to come out. So she ordered me a Nuclear Scan of my kidney.
Hey, it could be my kidney. But, don't ya think she would explore prednisone withdrawal first?
Get this..... At Dialysis I sit by this nice guy that had his kidney 18 years. He is a Physician. He told me that he was on 2.5 for six months before he finally quit. He said "even then I took 2.5 every other day and then every third day etc." We have the same Nephrologist. I started questioning him about "why she would wean me off differently." He said he just did it on his own.
I started taking 2.5 again. It can't hurt anything.
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I had a transplant the fail. My failure was acute so they stepped down the meds within two weeks. I still have the non-working transplant in me and have had no issues with it. I should say I lost my kidney about 3 years ago and only had it working for a little over 3 years. Were they hoping your transplant would start functioning regularly again?
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I think I have this figured out. I was on 10mg Prednisone for 17+ years. Your adrenal gland makes 7.5 on its own. They slowly weaned me off but NOT slowly enough for my adrenal gland to wake-up. :P
I was on 7.5mg for three weeks, then 5mg for three weeks and 2.5 for three weeks then zero as of January 15. I started getting sick around Christmas. I was up in Spokane and my legs were just rubber..... "Muscle weakness". I couldn't find anything on the Internet about Prednisone withdrawal........ dha it is a STEROID. I looked up "steroid withdrawal" and it looks pretty much like what I have.
I mentioned it to my Dr..... KIDNEY SPECIALIST, and she said "it certainly could be". But, she is still thinking my kidney needs to come out. So she ordered me a Nuclear Scan of my kidney.
Hey, it could be my kidney. But, don't ya think she would explore prednisone withdrawal first?
Get this..... At Dialysis I sit by this nice guy that had his kidney 18 years. He is a Physician. He told me that he was on 2.5 for six months before he finally quit. He said "even then I took 2.5 every other day and then every third day etc." We have the same Nephrologist. I started questioning him about "why she would wean me off differently." He said he just did it on his own.
I started taking 2.5 again. It can't hurt anything.
Good I idea, so many times I have found that the doctors are not always right and everyone's body reacts differently. So I to have adjusted my own meds. I have had doctors tell to double my dosage of Thyroid meds when in reality I knew I needed to lessen it. Well I lessened my meds and I started to feel a lot better, and there's been other times when I think my doctors are actually trying to kill me. ;)
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Geoff, no they didn't expect my kidney function to return. But, I think after being on 10mg of Prednisone for so long, that I needed to taper down a lot slower.
I'm not getting too excited, but I feel a LOT better today. I took 2.5mg again at noon because that is where I want it on my drug schedule.
I woke up and was hungry. That hasn't happened for a long time. I took a shower and didn't have to go lay down for an hour.
I read my email and felt like responding. I went to the store, I took the dogs for a walk, I went and got what is left of my hair trimmed. There is NO WAY in HELL I could have done that the last 3 weeks. Oh, yeah I picked up dog POOP in the yard... way over due. ;D
AND I'm typing NOW.......... ;D Hey, if you hit Preview there is a spell check!!! Thanks Epoguy. ::)
I don't want to be MAD at my Nephrologist, but don't ya think "Prednisone Withdrawal" should have been at least on her Radar Screen?
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Today is Monday. I have taken 3 doses of 2.5mg of Prednisone. I feel Wonderful!!! I had energy all day and I was hungry. My fever is gone.
OK, some of you may say "Prednisone masks symptions." SO WHAT! The Dr.'s put me through all kinds of test and can't come up with a better solution other than yank my kidney out.
They haven't even called to see if I lived over the weekend!
I feel like just acting like Nothing was ever wrong. That I didn't call them 3 times a day for 3 'frickin' weeks in desparation. "NO, I'm feeling fine, why? Is something supposed to be wrong with me?"
I'll keep you posted....... they will probably never ask! >:D
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Geoff, no they didn't expect my kidney function to return. But, I think after being on 10mg of Prednisone for so long, that I needed to taper down a lot slower.
I'm not getting too excited, but I feel a LOT better today. I took 2.5mg again at noon because that is where I want it on my drug schedule.
I woke up and was hungry. That hasn't happened for a long time. I took a shower and didn't have to go lay down for an hour.
I read my email and felt like responding. I went to the store, I took the dogs for a walk, I went and got what is left of my hair trimmed. There is NO WAY in HELL I could have done that the last 3 weeks. Oh, yeah I picked up dog POOP in the yard... way over due. ;D
AND I'm typing NOW.......... ;D Hey, if you hit Preview there is a spell check!!! Thanks Epoguy. ::)
I don't want to be MAD at my Nephrologist, but don't ya think "Prednisone Withdrawal" should have been at least on her Radar Screen?
Sorry for not replying to this post sooner. :-[
AWESOME Rerun. Good for you. This is what I am talking about taking, the doctors are not always right and sometimes they don't even have a clue. I love it that you had a good day. I get those sometimes and I cherish them.
Hopefully now someone in your situation may see this thread one day and are having the same problem as you and they will learn from it.
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I hope this does help someone on Long-Term Prednisone. Take it sloooow when you come down off it.
Okay, that was the nice me. Now, the not so nice "me" is getting more and more MAD at this damn Nephrologist. No call or message today.
When I see her, I'm going to tell her that next time she needs to caution the patient of the symptoms. And, there is a blood test that you are supposed to take before completely coming off Prednisone that checks your ACTH which tells you if your adrenal gland is working.
Not that I had one, but I've read it several palces since I've been educating myself. And I sure as hell will have one before I go off this stuff again. ;)
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Today was the day. I called the office and told them I was coming in to see Dr. K or Dr. G, or both but I was coming in. Then 5 minutes later my phone rings. "Hi Rerun, this is Dr. K. how are you doing." I said "FINE NOW", she said "did you start taking Prednisone again?" "YEA, NO THANKS TO YOU! I WAS IN ADISONIAN CRISIS AND ALL THE SYMPTOMS WERE THERE AND YOU DIDN'T EVEN CATCH IT" BLAH, BLAH, RIP, RIP
Well, to make a LONG story short, she denied everything and insisted that we talked about steroid withdrawal several times and I wouldn't go back on it.... which was total BS. She had gone over the symptoms with me...again total BS. Then it was.. I need to call and tell her when I'm not well. Okay.... Is 3 times a day not enough?
I probably cut my own throat, but it sure felt good to let her have it.
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Rerun, I'm glad you're feeling better. That is ridiculous they didn't tell you to slowly wean yourself off the Pred. And it's horrible they haven't called you back in 3 weeks! Did you ask the doctor WHY he didn't call back in that whole time period? That makes me so mad for you! >:(
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My Transplant failed in 1988 but it took two years before I was weaned of Prednisone. The Doctors lowered the dose by 2.5mg ever 6 months. So I never had any side effects with comming off prendnisone. Very happy for you that you are now feeling a lot better Rerun. The Doctors should have known better. :o
Kevno
(Allways question what a Doctor/Consultant do to you, never give for granted they are right)
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Thanks Kevo, that gives me more ammo if I ever have to talk to her.
Sara, sorry if I said they didn't call me back in 3 weeks. What I meant to say is I called her office 3 times a day for three weeks trying to get help, and on Friday January 27, was the last day I talked to her. The ball was in her court. She told me on that Friday that she would set up a Nuclear scan of my kidney and have stupid Teri call me with the appointment date. Then I started on 2.5mg (on my own) and felt better the next morning. So, since I was feeling better, I thought I'd wait to see when they would call me. They never fricken did. They had no idea I was better. My Gosh, I was so damn sick and not one thought on her part.
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When my transplant failed I was kept on prednisone and the two other anti rejection drugs until it completely stopped working. While you are still urinating, you need to be on some antirejection meds, as any amount of urine produced is better than none. Another reason you need to stay on the meds is that your body can still reject the kidney, even if it is completely failed. This can make you quite ill.
I was slowly weaned off the prednisone over quite some months. I was on one antirejection med until the kidney was taken out.
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When my transplant failed I was kept on prednisone and the two other anti rejection drugs until it completely stopped working. While you are still urinating, you need to be on some antirejection meds, as any amount of urine produced is better than none. Another reason you need to stay on the meds is that your body can still reject the kidney, even if it is completely failed. This can make you quite ill.
I was slowly weaned off the prednisone over quite some months. I was on one antirejection med until the kidney was taken out.
That is a very good post! Thank you!
I have been on Prednisone since 1990 even though my transplant failed in 2001. I was on 20mg every day but then down to 10mg every day and then after the urine output was nill I was put eventually down to 7.5mg every day and since getting Peritonitis last summer they changed me to 7.5mg every OTHER day. The reason it is not 5mg is because when I had my original kidneys removed (bilateralnephrectomy) they had also had to take out my adrenal glands that sit on top of the kidneys.
Since was was taken off so slowly (and actually had started weaning myself off a lot sooner than they did but very slowly) I didn't get any side-effects from that but I do remember how when I first got my transplant how I felt that they had really downplayed the side effects I would get with the pills in the first place. I didn't know I would gain so much weight and I didn't know I would get such a big "moon-face" and I didn't know it would make my depression worse! I think it is important to always do your OWN research and not just depend on what the doctors tell you to as they are too busy to be on top of everything for every patient. Plus they can be wrong. Most of what they know are just from school or experience.. but more so from school.
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Dont you hate the moon face and the weight gain! Its one thing Im not looking forward too, but if it means no dialysis then Im prepared for it.
angieskidney....how come they removed your adrenal glands? Ive had a bilateral nephrectomy too.
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angieskidney....how come they removed your adrenal glands? Ive had a bilateral nephrectomy too.
Not because of the bilateral nephrectomy but because of the same reason they had to remove both my kidneys - terrible infections. I had reflux where everything backed into my kidneys over and over again for 9 years. By the time it was discovered what was going on it was too late to save them. I had to get the kidneys removed and the adrenal glands because they were also severely infected. All of this could have been avoided if the doctor had listened to my mom when I was a baby and ran tests. Instead he accused her of being an overworrying first time mother and just pinched my cheeks and said I was fine. All I needed was minor surgery and I could have still had my original kidneys today!
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Oh thats terrible angieskidney! If a mum is worried about something then they are probably right, you know with the mother instinct and all! Even now mum knows when I'm not well without having to ask me. I have no idea how long I had glomerulonephritis for before the diagnosis. It was only about 4 months afterwards that I had my kidneys out and started dialysis in the children's ICU. Thats probably the most drugged up I have ever been, which I guess is a good thing because I don't remember much about it. Initially, the epidural had come out and no one knew, so I was pressing the PCA like mad and not getting any relief. It wasn't until mum found that the sheets were wet that they realised it had come out, plus I was in agony.
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Wow, another great topic. Too bad I didn't read it a couple of weeks ago. :'(
My transplant started failing in March, two months after the transplant... I went back on dialysis in September...and at that time, remained on my immunosupressants. At my October appointment, my doc told me to immediately stop the myfortic and to taper the cyclosporine. With the 5 mg of daily prednisone, he told me take one every other day...for two weeks and then stop altogether. Well, I stopped the prednisone 2.5 weeks ago...and I have been very ill and was sure I was headed for a nephrectomy. Two days ago, the transplant nurse called to say that she didn't think I was in rejection, but hadn't been tapered properly from the prednisone. I'm back on 10mg prednisone now. My local nephrologist, though, wanted the transplant team to rip out the transplant...it hadn't occurred to her that I might have prednisone withdrawal.
Now that I read this forum, I think it was actually pred. withdrawal. I'm not feeling a hundred percent, not feeling like crawling under a rock to die... but I am feeling better...
Boy...I'm glad I found this place...I'm usually on top of everything...but you never know where you're gonna pick up some new information.
Michelle ~ Treasure
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After my transplanted kidney failed I did not see a doctor after my initial re-introduction with dialysis for 9 months and a took myself off my drugs. I was on three blood pressure tablets and cyclosporin and prednisone. I stopped my BP meds ASAP and controlled BP through fluid removal. I then my cyclosporin (100mg) once a day instead of twice a day for a month, after that I took 75mg, 50mg, the following months. I did the same with my prednisone. I was on 5mg daily and went down to 4, 3 , 2 ,1 and finally none over the months.
When I Finlay saw a doctor 9 months later he said "right lets get you off some of these drugs". I then told him what I had done and he would have suggested doing exactly the same.
Rerun I would if you try to get off all the poisons you can. You know your body the best so do it at the rate you feel is right.
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Well of course it's prednisone withdrawal. Why would any of the docs think otherwise? The thing they don't tell you is that if you stop your prednisone too quickly, you might even die (not common, but it has happened). I've never been on pred for any length of time, but I know people who have been weaned off it, and it takes a very long time. Slow and steady wins the race in this case.
Glad to hear you're feeling better.
Take care.
Cora
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I started this post on January 27, 2006 and here it is almost Thanksgiving and I'm still on 2mg of Prednisone. Looking back I think I would have died if I hadn't gone back on it.
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This is very good advice. I've been on Prednisone for two years. Sometimes I've been on high doses, up to 60 mg. per day, then they will taper it off. But, until recently I've never been able to get below 10mg. per day, then it seems like the vasculitis flares up again and they raise it back up.
I'm so sick of the side effects that I've really pushed my doctor to taper it off. I was on 20 mg. at the end of July, I went to 15 mg. at the end of August. I went to 10 mg. on September 12th, and I got him to lower it to 7.5 mg. on October 27th.
I have an appointment with him in a couple of weeks and I wanted him to lower it to 5 mg. per day, but maybe I'll wait a little longer. He keeps warning me that I can't taper off too fast, but I just want to lose some weight and I'm tired of being covered with bruises because of the Prednisone.
Maybe I'll stay at 7.5 another month and then try to lower it to 5. I'd rather stay on 7.5 and get the dialysis under control before I try to tackle the Prednisone issue.
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I'm going to ask to be put on a prednisone-free regime after my transplant. I know they are doing it increasingly often at my hospital, but not for everyone. They sometimes do it at patients request if they think it's reasonable. Normally I should be a low-risk patient, so... fingers crossed...
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Mallory. One mg a month. So tell your doctor that you want to go down to 7mg for 1 month then 6mg for one month then 5. Don't drop from 7.5 to 5. .......S - L -O - W........
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Thanks, Rerun. Good advice. I am so anxious to get off this freaking Prednisone. My catheter is still bleeding (it was put in on 11/15) and I think it's because my tissue is so bad from the Prednisone. I know Prednisone does a lot of good things (as my doctor keeps reminding me), but it does a lot of bad things, too.
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I am so glad I read this. My transplant stopped working in September and I am still on 5mg a day of Prednisone. My doctor has not even started weaning me off of it. She did stop the prograf because my PD catheter wasn't healing well. I am only taking the prednisone and rapamune. I am not in a hurry to get off of it because I still make a lot of urine and I want to avoid the fluid restriction as long as possible,
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They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in. Went from 10 mg down to 0 in 10 days. It was kinda rough, really rough, the first month because of the joint pain but I am glad I no longer take it.
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They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in. Went from 10 mg down to 0 in 10 days. It was kinda rough, really rough, the first month because of the joint pain but I am glad I no longer take it.
BigSky, How long had you been taking Prednisone when they stopped it? I sure would like to get my dose lower, but I've been on Prednisone for about two years, wouldn't that make a difference?
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Was on it for just over 12 years.
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They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in. Went from 10 mg down to 0 in 10 days. It was kinda rough, really rough, the first month because of the joint pain but I am glad I no longer take it.
That is just plane WRONG! Joint pain plus hallucinations, and jerking awake!! Didn't you have any of that??
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:shock: :roll:
That is just plane WRONG! Joint pain plus hallucinations, and jerking awake!! Didn't you have any of that??
Nope, only had the joint pain and that was it.
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I'm in the long waiting list for transplant but familiar with presisone as I have Chron's....last time it took a hole year to get rid of it....every month we'll reduce a bit until we got to take one day yes and the next none....I'm telling you....it takes time. Just cutting it is horrible and you feel super sick....this is my 2 cents worth of info....good that you are feeling better though
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Mallory. One mg a month. So tell your doctor that you want to go down to 7mg for 1 month then 6mg for one month then 5. Don't drop from 7.5 to 5. .......S - L -O - W........
Seems different docs do it differently. Sometimes you have to be really strong and tell your docs what you feel comfortable with and work with them. If they feel you are working against them however they call you noncompliant. :(
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I am so glad I read this. My transplant stopped working in September and I am still on 5mg a day of Prednisone. My doctor has not even started weaning me off of it. She did stop the prograf because my PD catheter wasn't healing well. I am only taking the prednisone and rapamune. I am not in a hurry to get off of it because I still make a lot of urine and I want to avoid the fluid restriction as long as possible,
If your graft has now failed, you should be off the rapa to ensure wound healing. I am thinking about a pancreas transplant and they have been quite clear about taking me off my rapa for the first few weeks. Rapamune plays hell with wound healing. When I first had my kidney transplant, they took me off it for a week too so I would heal better. You actually heal better on prograf than you do on rapamune.
Cora
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I spoke with Jenna's transplant coordinator yesterday and she reiterated that
their transplants are "steroid free" - so I hope this is the best way to go?
~Karol
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I spoke with Jenna's transplant coordinator yesterday and she reiterated that
their transplants are "steroid free" - so I hope this is the best way to go?
~Karol
I wish they had that in my transplant hospital... I don't like all the side effects and if they can do it without then GREAT!! :clap; :2thumbsup;
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I wish they had that in my transplant hospital... I don't like all the side effects and if they can do it without then GREAT!! :clap; :2thumbsup;
I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient. Those patients that have low levels are eligible for steroid free transplants. However steroids are still given for anywhere from 2-6 weeks depending on the patient.
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I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient. Those patients that have low levels are eligible for steroid free transplants. However steroids are still given for anywhere from 2-6 weeks depending on the patient.
Yeah, they advertise one thing, but reality is another.
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I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient. Those patients that have low levels are eligible for steroid free transplants. However steroids are still given for anywhere from 2-6 weeks depending on the patient.
Yeah, they advertise one thing, but reality is another.
Wow!! I didn't know! Thanks for informing us! :thumbup;
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My transplant center does a 4 day protacol with prednisone. The surgeon said mine would be alot longer because of being sensitized patient and needed pheresis. Just depends on the center and the patient.
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My transplant center does a 4 day protacol with prednisone. The surgeon said mine would be alot longer because of being sensitized patient and needed pheresis. Just depends on the center and the patient.
I have never even HEARD of pheresis before this web board!
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The process has been around for awhile and used with other diseases - ie, Crohns disease. It is fairly new with transplants, but if you have a high PRA (several of us on this site) it is the only way to get a transplant.
When I was first diagnosed, I put plasmapheresis in Google and founds lots of research at Johns Hopkins and Mayo Clinic. I go to a large transplant center(UNC) and Duke U. is 30 miles away and neither of them do this procedure with transplants. Check out any of Jill D.'s post--she is at Mayo right now going thru the process and hopefully will get a kidney from her sister Dec. 5th.
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I took prednisone from the age of 12 to 18, then I was off of it until I had my transplant in 1999, then I tok until my transplant failed in 2004. I have been on many different doses, some high, some low... some SUPER high and IV, of course always weened off slowly a little lower each month or every 2 weeks depending on how high of a dose I was on and how low we needed to get. I took prednisone for RA (Rheumatoid Arthritis) and SLE (Lupus), then for kidney transplant. Only thing that ever happened to me from prednisone is the "moon face" which at first went away in the begining, but then after being on it for years, it just stayed and never went away.. that sucked but i'm used to the round face now. I never had hallucinations or anything when taken off fast or abruptly. I did get bone deterioration in my ankles from being on it so long and so high of doses... luckily I can still walk after my ankle fusions because my surgeon was AWESOME... he worked with the Jacksonville Jaguars football team when they were in their first few years. Anyways.. I still take 5mg once in awhile... sometimes every other day.. sometimes once a week.. for my RA, so when my joints hurt I take one... since I moved to Iowa, they hurt more... so I take it more often.. but never had withdrawls or anything.. that I know of or am aware of.
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. :banghead;
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. :banghead;
You sound like me .. I was on it since I was 16 til I ... oh wait I am still on it :P
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. :banghead;
You sound like me .. I was on it since I was 16 til I ... oh wait I am still on it :P
:lol; I have a hate/love relationship with prednisone. I hate it for what it can and does do to ya... but I love it b/c how it helps ya at the same time... :lol; Crazy. ::) We have a lot in commin, being sick at such a young age and blah blah, however our kidney failure is from different things, too bad we didn't know each other when we were kids, woulda made my teenage years easier to actually know another teenager going through it also... :thumbup;
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I've been on prednisone for 23-1/2 years. I got a transplant when I was 21y/o on 5/22/83 (Mothers Day! :2thumbsup;) I agree with the love/hate relationship with this drug. It has caused me a whole slew of problems. It has also helped my kidney survive for all these years (transplant currently failing). I still look forward to hopefully getting another transplant despite the bad side of immunosuppression. Dialysis, Transplants and all they involve don't scare me, but dieing prematurely does. I will do WHATEVER I have to do to prevent that! :)
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
That's just great. I'll finally get off the Prednisone and I'll end up looking like a bloodhound...
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There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
That's just great. I'll finally get off the Prednisone and I'll end up looking like a bloodhound...
:lol; Everyone has different side effects (if any) to prednisone... just because one person's looks came out a certain way, does not mean yours will also ;D
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:lol; I have a hate/love relationship with prednisone. I hate it for what it can and does do to ya... but I love it b/c how it helps ya at the same time... :lol; Crazy. ::) We have a lot in commin, being sick at such a young age and blah blah, however our kidney failure is from different things, too bad we didn't know each other when we were kids, woulda made my teenage years easier to actually know another teenager going through it also... :thumbup;
Exactly! EXACTLY!! When I was a teen I felt soooo alone and like no one understood what I was going through. I really wish I had known you back then as well. That was actually the whole reason I made my own website. I was hoping to meet people who have been sick since a child like me! lol :clap; :2thumbsup;
There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! :o
That's just great. I'll finally get off the Prednisone and I'll end up looking like a bloodhound...
:lol; Everyone has different side effects (if any) to prednisone... just because one person's looks came out a certain way, does not mean yours will also ;D
Ya one thing they made me realize in Toronto back in 1990 was that EVERYONE is different. You can't base your future on someone else's experiences. :thumbup;
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Back to 2mg of Prednisone. I cannot get off this stuff. It must be like cocaine!!?? I met with a PCP to TELL her I wanted the blood test to see if my adrenal gland had ever started working. The test is ACTH. My question to her was "Do I need to be off Prednisone in order to take this test." She didn't know and would get back to me on Monday. That was 2 days ago. So......I call. The girl said she would get back to me. I talk to the girl later on in the day and she said "yes, stop the Prednisone and you appt for the blood test is next Friday"
NO! I can't just STOP prednisone for 9 days. That is the whole point of this TEST is I can't get off prednisone. I will try to stop taking it for 3 days MAX.
:banghead;
So, I start YELLING and the girl gets frustrated and hangs up on me.
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Why cant you get off Prednisone? I was on it since I was 12 years old, and once weened down to the 5mg a day in 2004, I stopped it.. no prob... After 14 years of taking Prednisone and being on very high doses to very small doses... to IV prednisone VERY high doses... I had no problem stopping it...
What happens when you stop it?
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Why cant you get off Prednisone? I was on it since I was 12 years old, and once weened down to the 5mg a day in 2004, I stopped it.. no prob... After 14 years of taking Prednisone and being on very high doses to very small doses... to IV prednisone VERY high doses... I had no problem stopping it...
What happens when you stop it?
Joint pain, muscle weakness, lack of Appetite, fatigue. I think my adrenal galand is not functioning properly. Your adrenal gland naturally produces 7.5mg of "whatever" is like prednisone and so when you go off of Prednisone your adrenal gland should kick back in. Mine is sluggish.
The Doctor called me back and "apologized" for the confusion. She said no one knows if you need to be completely off steroids in order for the test to be accurate. You go to the lab at 8:00 in the morning and they take a blood draw. They then inject you with ACTH the stuff that stimulates your adrenal gland and then 3 or 4 more blood tests to see if the adrenal gland reacted properly.
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Ahhh ok. well hope it goes well hun!
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I wonder if my Neph is going to recomend prednisone Friday. It's like he has a thing about prednisone, I'm not looking forward to it and I have refused it in the past. I'm not sure what I'll decide yet. About 3 years ago they thought I had cancer of the adrenal gland but later dismissed it, so now I'm wodering if there is an abnormality with my adrenal gland, and if I will be faced with the same problems with prednisone as Rerun is having. Guess I might find out.
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If you look up Cushing's Disease, it explains how to do the blood test your going to have done, in great detail. Hope that helps.
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they strated weaning my daughter off from predisone since nov..it has been a rough ride...i remerber when she on high doses...lol i didnt want to be around her....they got 2.5 mg every other day....they want her adernal glands to start working......i want to know more about the prednisone regime.....i think im going to talk to this with her doc.....Does anybody have any information
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they strated weaning my daughter off from predisone since nov..it has been a rough ride...i remerber when she on high doses...lol i didnt want to be around her....they got 2.5 mg every other day....they want her adernal glands to start working......i want to know more about the prednisone regime.....i think im going to talk to this with her doc.....Does anybody have any information
It is all over the board on how to wean people off. But, for me I honestly cannot get off. That is why I'm having this test. I think my adrenal gland has been damaged over the years.
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Why cant you get off Prednisone? I was on it since I was 12 years old, and once weened down to the 5mg a day in 2004, I stopped it.. no prob... After 14 years of taking Prednisone and being on very high doses to very small doses... to IV prednisone VERY high doses... I had no problem stopping it...
What happens when you stop it?
Joint pain, muscle weakness, lack of Appetite, fatigue. I think my adrenal galand is not functioning properly. Your adrenal gland naturally produces 7.5mg of "whatever" is like prednisone and so when you go off of Prednisone your adrenal gland should kick back in. Mine is sluggish.
I have to stay on Prednisone myself because I had my adrenal glands removed when I had both kidneys removed back in 1990.
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Angie, don't they have any other hormonal replacement other than Prednisone for you?
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Angie, don't they have any other hormonal replacement other than Prednisone for you?
Well I was already on Prednisone for my transplant. Then they lowered me to 5mg and then when they saw in my chart that I had my adrenal glands removed years ago they said they had to raise my Prednisone back up to 7.5mg. There was no talk of any other meds. What else would I take?
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
Explain, is it bone pain,? I might have fibromyalgia and that might keep me off Prednisone because it may relieve my bone and joint pain temporarily, my neph said when I go off of it the pain would be twice as bad as it is now.
Bait anyone?
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I've been suffereing from the nastiest form of gout since late 1970's. At this point they tell me the only medication they can safely? use is prednisone.
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I've been suffereing from the nastiest form of gout since late 1970's. At this point they tell me the only medication they can safely? use is prednisone.
OMG the pain connected to gout is horrendous,I get gout all the time in my big toe by the joint that connects to my foot. Usually my right one but have had it in both.
I honestly feel your pain...been there.
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Seems like gout is a relatively a common condition for renal paients. Are you taking anything to control your gout pain?
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Seems like gout is a relatively a common condition for renal paients. Are you taking anything to control your gout pain?
Is there anything to prevent this for people who must take Prednisone forever even on dialysis (me) but don't have gout yet?? :thx;
Sluff, should I just ask this here (http://ihatedialysis.com/forum/index.php?topic=2638.msg37338#msg37338) instead? I noticed your new thread on Gout after I already posted this.
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I started a new thread here...http://ihatedialysis.com/forum/index.php?topic=2638.msg37338#msg37338 regarding Gout.
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I started a new thread here...http://ihatedialysis.com/forum/index.php?topic=2638.msg37338#msg37338 regarding Gout.
Damn boy you are fast! Okay I reasked my question in the NEW Thread! :thx;
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Your all so net savvy. Very impressive.
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
Well... Prednisone helped me walk also, cuz I have RA.... however, Prednisone also caused me to NOT walk... b/c being on it for so long, and high doses at times, it deteriorated the bones in my ankles, both of them... and I had to have both ankles fused.... and when your 15/16 years old and told that when fusing ankles, you will no longer be able to walk again... it's just horrifying. Luckily for me again, I had the best Orthopedic Surgeon at the time... he was the O. Surgeon for the Jacksonville Jaguars the first couple of years when they first became a team. He did the surgery so well, I CAN walk... first one hes ever had that could walk again still.... he even had me sign a consent to be able to use my story and experiences in a book of his. To give hope to others that it CAN happen... :)
So yah, theres always a bad effect that can happen from the Prednisone causing good... Damn that medicine :P
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
Well... Prednisone helped me walk also, cuz I have RA.... however, Prednisone also caused me to NOT walk... b/c being on it for so long, and high doses at times, it deteriorated the bones in my ankles, both of them... and I had to have both ankles fused.... and when your 15/16 years old and told that when fusing ankles, you will no longer be able to walk again... it's just horrifying. Luckily for me again, I had the best Orthopedic Surgeon at the time... he was the O. Surgeon for the Jacksonville Jaguars the first couple of years when they first became a team. He did the surgery so well, I CAN walk... first one hes ever had that could walk again still.... he even had me sign a consent to be able to use my story and experiences in a book of his. To give hope to others that it CAN happen... :)
So yah, theres always a bad effect that can happen from the Prednisone causing good... Damn that medicine :P
That is an amazing story! Wish more surgeons were that good! :thumbup;
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
To you and Angie - Your adrenal glands produce 7.5mg of steroids daily. That is why you are on 7.5mg of prednisone daily as a replacement therapy. Without it you would die. People cannot live without adrenal glands.
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
To you and Angie - Your adrenal glands produce 7.5mg of steroids daily. That is why you are on 7.5mg of prednisone daily as a replacement therapy. Without it you would die. People cannot live without adrenal glands.
Really??
What would happen first? Are the only adrenal glands on the kidneys? People have asked me this and told me there are more somewhere. I just never bothered to look it up because I didn't think it was a big deal. They had to remove the ones on my kidneys as they had gotten infected as well.
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I've been taking prenidzone since I was 13 years old. Without 7.5mg a day I cannot even walk.
To you and Angie - Your adrenal glands produce 7.5mg of steroids daily. That is why you are on 7.5mg of prednisone daily as a replacement therapy. Without it you would die. People cannot live without adrenal glands.
Really??
What would happen first? Are the only adrenal glands on the kidneys? People have asked me this and told me there are more somewhere. I just never bothered to look it up because I didn't think it was a big deal. They had to remove the ones on my kidneys as they had gotten infected as well.
I don't know Angie. But, I just asked the doc who is providing me this test on my adrenal glands if people can live without adrenal glands and she said "no." I believe it because I feel like I want to die without it for a few days. My test is next friday and then it takes two weeks before I know anything. In the mean time "yes" I'm going to stay on 2mg of Prednisone. I have to stop it 3 days before and it may be rough. But, stay tuned.
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Try to hang in there Rerun my prayers are with you as you try and get through this test.
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Okay :) :thumbup;
Good luck on the test Rerun! :cuddle;
I know on my medical alert bracelet it says that I have Adrenal Insuffiency (http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf) but I really know very little about it.
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Okay :) :thumbup;
Good luck on the test Rerun! :cuddle;
I know on my medical alert bracelet it says that I have Adrenal Insuffiency (http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf) but I really know very little about it.
Adrenal insufficiency
From Wikipedia, the free encyclopedia
In medicine, adrenal insufficiency (or "hypocortisolism") is the inability of the adrenal gland to produce adequate amounts of cortisol in response to stress. See also: Adrenal Fatigue or Hypoadrenia.
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What? No Link? lol
Here we go :P http://en.wikipedia.org/wiki/Adrenal_insufficiency
I was surprised there wasn't a lot of info in that page as there is in this one: http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf
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I saw the GP today and my adrenal gland is fine. There may be another underlying cause of my joint stiffness. I'll just keep taking the 2mg of prednisone. I don't really want to know what 'else' is wrong with me.
But get this. She is just a GP. I went there (my GP's office) she is a partner and I saw her because he was on vacation. We talked for about 45 minutes and she had this student in there too. They charged my insurance $306. My insurance paid $235. WTF! I asked her about it today and she had no idea. She didn't think it was too much. I told her my heart specialist only charges $70 for an office visit. She charges $400 an hour? So I called the billing office and they said they pay the code and the code was for an office visit. Well, so an office visit is $400 an hour? Well, no it depends on the diagnosis etc. Well, I went in there and told her what I wanted. She didn't diagnose anything. They told me they would look into it and for me to call them back in 2 weeks. (hoping I would forget). Next I'm gong to call my insurance office and tell them that I feel I was overcharged.
I know, I know...... dialysis if $40,000 a month and I concerned about $300. But, damn it what is considered too much anymore? A lawyer charges a lot, but at least they tell you up front what the charges are going to be.
I just hate it when they say "What do you care...insurance paid for it." Well, SOMEONE should care.
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I didn't read all of the postings (I'm at work), but I caught "joint pain" with "prednisone" and my ears (eyes?) perked up. I was on prednisone to treat FSGS, pre-ESRD. I was only on it for about 8 months total (starting at a dose of 60 mg/day). Joint pain was a big problem. While I was still on it, I couldn't walk in the morning until I had my daily dose and waited a half hour for it to kick in. After I was weaned from it, I was barely able to walk for several weeks because it hurt so much. It took a few months of being off it before my joints stopped hurting, and even now, about 5 years later, my knees aren't back to 100%.
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AAAHhhhhhhhhh I was right (I love it)
This Dr. called me back today to tell me that the baseline adrenal gland stress test had additional information that she just found. My baseline was 8 but my test results after the injection were 11 and 14.5 respectively. I guess at a minimum it should have hit 18. She indicated that this may cause a problem if I'm ever sick with the flu or pneumonia. I need to tell doctors that I need "Stress Dose Steroids."
I'm not sure I understand the implications. Should I stay on 2mg of prednisone or go up to 3? Do I ever try to get off prednisone completely? Do I have some underlying problem that we need to look into.
She said my pituitary gland and adrenal gland are working they are not dead.
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AAAHhhhhhhhhh I was right (I love it)
This Dr. called me back today to tell me that the baseline adrenal gland stress test had additional information that she just found. My baseline was 8 but my test results after the injection were 11 and 14.5 respectively. I guess at a minimum it should have hit 18. She indicated that this may cause a problem if I'm ever sick with the flu or pneumonia. I need to tell doctors that I need "Stress Dose Steroids."
I'm not sure I understand the implications. Should I stay on 2mg of prednisone or go up to 3? Do I ever try to get off prednisone completely? Do I have some underlying problem that we need to look into.
She said my pituitary gland and adrenal gland are working they are not dead.
I am highly interested in what they tell you as I have no Adrenal Glands (as I mentioned before, they were removed with the kidneys). Did she tell you WHY that may cause a problem if you ever are sick with Pneumonia? I have had it 3 times already and am just 33. Does having Adrenal Insufficiency make it easier to get it or harder to get over it??
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I will let you know. I'm going to search "Stress Dose Steroids" and see what I find.
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I will let you know. I'm going to search "Stress Dose Steroids" and see what I find.
Thx Rerun! :thumbup;