Prednisone

[Rerun]

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?   

[Epoman]

I wish we had more members who have had transplants that could answer this question for you sorry, I will ask around.

[Rerun]

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.

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.

[geoffcamp]

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?

[Epoman]

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.

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. 

[Rerun]

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. 

AND I'm typing NOW..........     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?

[Rerun]

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! 

[Epoman]

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. 

AND I'm typing NOW..........     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.

[Rerun]

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.   

[Rerun]

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.

[Sara]

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! 

[kevno]

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.   

Kevno
(Allways question what a Doctor/Consultant do to you, never give for granted they are right)

[Rerun]

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.

[Panda_9]

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.

[angieskidney]

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.

[Panda_9]

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.

[angieskidney]

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!

[Panda_9]

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.

[Treasure]

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

[AlasdairUK]

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.

[coravh]

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

[Rerun]

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.

[mallory]

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.

[Fighter]

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...

[Rerun]

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........