Effects of Corticosteroids?

[kellyt]

I'm 3 months post transplant and have been on a maintenance dose of 5 mg of prednisone for over a month and I still have crazy mood swings. Lucky for me, I have absolutely no problem with weight and don't feel uncontrolled urges to eat. The doctor has had me try my prednisone dose at different times of the day to see if it helps me deal with the side effects. First I took it at 7 am with breakfast and I had side effects. Then I tried noon with lunch, but still had side effects. Now I'm trying dinner time and so far it does seem to help, but only because instead of spending the whole day awake on prednisone, I'm spending much of that time asleep. I have never had anxiety problems like this before, except for that last time I was on prednisone 10 years ago for 6 months. It's not so much a feeling of anxiety as a feeling of extreme agitation leaving me with a quick temper and aggressiveness. Exercising everday definitely helps to prevent extreme mood episodes because it helps to get rid of all that energy. I'm hoping things will settle down in the long run.

Wow!  At three months post op you are already on maintenance of 5 mg?  I wouldn't have had trouble with weight gain either if I had tapered down that fast.  I'm jealous!     I left the hospital on 30 mg and I was probably around 20 mg at 3 months post op.  All the other stuff you mention I also had.    I hope you can get to a point of no side effects soon.

[cariad]

MakeMyDay, predisone is a big reason I've never wanted anything to do with a transplant. I know they have newer drugs, but boy, doctors sure do love them some Predisone! It's what destroyed my father's body: avascular necrosis in both shoulders, both hips, both knees... all were replaced, but the prednisone-caused glaucoma was an ongoing thing. It may works miracles in some regards, but I think it's a terrible drug and I'd do anything to avoid it.

Oh, but DD, do not let this stop you. I don't know where you are located (OK, let's take a wild guess and say the Southwest) but steroid-free protocols are everywhere now. If your centre does not have one, ask them to try it with you or switch centres. I read a journal article years ago that said that longterm steroid use has been found to be detrimental to transplants. I have had my transplant 10 months and I only received one intravenous, perioperative mega dose of prednisone. I received the same back in 2007 when I was hospitalized for viral meningitis - they called it a 'crisis dose'. Other than that, no prednisone in years. Tell them about your history and I am sure any decent transplant program will be eager to see you off prednisone as quickly as possible.

[kristina]

This is all extremely interesting and I thank you all very much indeed for your contributions
to this deeply concerning and delicate subject, that is the taking of corticosteroids.

It seems that there are different protocols:
those that step-down prednisone quickly;
those that retain a higher dose for a longer period;
and, those that have found a new way without prednisone.

This is how I understand it from the above entries.

Could it be we are moving into a time where prednisone
will be superseded by another protocol with less side-effects?
 
It also appears that the side-effects can vary significantly
in variety and potency from person to person –
which is most disconcerting for the patient,
as they don’t know what will be the effect on them.

I am extremely grateful for everybody’s openness.

Thanks again from Kristina.

[rsudock]

MakeMyDay, predisone is a big reason I've never wanted anything to do with a transplant. I know they have newer drugs, but boy, doctors sure do love them some Predisone! It's what destroyed my father's body: avascular necrosis in both shoulders, both hips, both knees... all were replaced, but the prednisone-caused glaucoma was an ongoing thing. It may works miracles in some regards, but I think it's a terrible drug and I'd do anything to avoid it.

my bro had avascular necrosis in both hips they only replaced one of them. he was 23 years old when this happened & only had the kidney 4 yrs.  but he required many high doses of prednisone b/c the kidney was constantly rejecting...my poor baby brother

xo,
R

[Rerun]

Be sure if you are on long term prednisone to taper off very slowly.  1mg a month.  So if you are on 10mg go down to 9 for a month, then 8 for a month.  Yes they come in 1mg tablets.

I have never been able to quit completely.  I'm still on 2mg a day.  I just get too stiff.  My adrenal glands just got too use to the prednisone and quit making as much as it should.

I think everyone should be on 2mg a day.  I feel great.   

[kristina]

Thanks for these two posts, rsudock and Rerun, a very low dose seems to be tolerable,
but I wonder what the long-term effect is even on a low dose.
I wish everyone on this medication all the very best as it seems to be both a very serious treatment
and very difficult to tailor to one’s needs such that it is tolerated comfortably.

Thanks again from Kristina.