Prednisone

[angela515]

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. !!

That's just great.  I'll finally get off the Prednisone and I'll end up looking like a bloodhound...

  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 

[angieskidney]

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...    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... 

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

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. !!

That's just great.  I'll finally get off the Prednisone and I'll end up looking like a bloodhound...

  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

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.

[Rerun]

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. 

                                           

So, I start YELLING and the girl gets frustrated and hangs up on me.

[angela515]

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?

[Rerun]

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.

[angela515]

Ahhh ok. well hope it goes well hun!

[Sluff]

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.

[angela515]

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.

[carolyn77531]

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

[Rerun]

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.

[angieskidney]

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.

[Rerun]

Angie, don't they have any other hormonal replacement other than Prednisone for you?

[angieskidney]

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?

[renal30yrs]

I've been taking prenidzone since I was 13 years old.  Without 7.5mg a day I cannot even walk.

[Sluff]

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?

[renal30yrs]

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.

[Sluff]

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.

[renal30yrs]

Seems like gout is a relatively a common condition for renal paients.  Are you taking anything to control your gout pain?

[angieskidney]

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?? 

Sluff, should I just ask this here instead? I noticed your new thread on Gout after I already posted this.

[Sluff]

I started a new thread here...http://ihatedialysis.com/forum/index.php?topic=2638.msg37338#msg37338  regarding Gout.

[angieskidney]

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! 

[renal30yrs]

Your all so net savvy.  Very impressive.

[angela515]

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 

[angieskidney]

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 

That is an amazing story! Wish more surgeons were that good! 

[Rerun]

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.