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Prednisone Taper and Nervous

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Posted 12/29/2011 2:06 AM (GMT 0)
I was on 32 mg of Medrol (euiv to 40 mg of pred) on November 5th, didn't get well, went for my first hospital stay on Nov 12th, and by then I had weaned down to 24 mg as per docs orders.  In hospital I was put on 40 mg of Salumedrol (intravenous) and left hospital 2 days later (after an aweful experience) on 32 mg of Medrol again. 

I ended up back in a different, better hospital a few days later, this time on Salumedrol again, 60 mg.  Doc (different, but one I who knows my case) weaned it to 40 within a few days, but bad synptoms again so back up to 60.  I left the hospital after a week on 50 mg of Pred and went back in three days later on Nov 27th for surgery scheduled on the 29th.  I was put on 45 mg of Salumedrol before surgery, then given a shock dose for the surgery.   

On the day follwoing surgery, I was weaning from 80 mg of Salumedrol.  By the time I left the hospital, the GI had taken over the weaning process, and had me down to 45 mg.  I left the hospital taking 50 mg of Prednisone, and she has had me weaning down by 10 mg increments every 3-4 days, until I hit 30, then we have been going down by 5 every 3-4 days, then we start going down by 2.5 every 3-4 days and hope to be off by two weeks from today. 

That would be a month and a half of weaning off Prednisone.  I am actually nervous that she is weaning me too quickly, and that I am going to have a crisis as a result.  Every time we wean down a notch I experience significant fatigue.  Granted, I am not 100% anyway from my surgery, but I still notice the difference.  It is not debilitating, but still fatigue.  I also have had tightness in my chest since the surgery, that does seem to bother me more each time I go down, but does improve at times too.  

Blood pressure has been normal, vitals normal, blood oxygen normal, CBCs were fine except blood counts are low with the exception of white count which was a bit elevated. 

One day in the hospital they almost missed giving me my steroids while they waited for doctors orders, and I think I got less than I should have that day. 

Does this tapering schedule sound okay based on what I have shared?  I have to start reading things on the Internet that are freaking me out!  I know Adrenal crisis is real, but I have followed my doctor's orders exactly.     

 

 

Posted 12/29/2011 12:26 PM (GMT 0)
Are you in touch w/your gi about this? Mine always gave me a bit of choice in the tapering toward the end. I definitely felt it every time I went down, and sometimes it was good to go slower.

10 mg every 3-4 days is really fast -- I never went that fast. Usually I would do the 5 mg every 4 days out of the hospital to get down to 30 or 40 and then it'd be 5 mg a week. I did go down 10 mg a week for two weeks to go from 40 to 20 for surgery, and that was rough.

I would imagine that they want to get you off as fast as possible, and since you had surgery, you're not going to flare from going down too fast. But if it feels wrong then talk to your doc and see if you can slow it down.

You need glucocorticoids to cope w/the stress of the surgery, and your body isn't making them anymore..... I don't think that's a precise formula, so would go by what you feel more than what you read on the internet -- I don't think your doctor's formula is necessarily dangerous in general, but it might be wrong for you at this moment.

I had a complication a week after surgery where I had to go back in the hospital for 4 days. I was down to 15 mg at that point, but we basically stopped the tapering schedule.... I stayed at 15 in the hospital and for another week after I got out.

So, talk to your gi. It's not going to be a huge difference in the scheme of things if you slow the taper down a bit (and she might be assuming that you want it to go as fast as possible....)
Posted 12/29/2011 4:36 PM (GMT 0)
     If I remember correctly, (it's been over a yr and a half since my surgery) I think I was on 20 mgm of prednisone at time of surgery.   I stayed on the 20 mgm for a week post op and then tapered by 5 mgm weekly.  So, I was on prednisone for about a month post op. 

     My family doctor was concerned about my adrenal glands and had me tested a few weeks after I was off prednisone completely and everything was fine.

Posted 12/29/2011 9:45 PM (GMT 0)
I did want to get off it fast, mainly because I am already (at least) osteopenic (sp?) and always have the worst of the symptoms while on pred. This time the moon face and acne never happened and everything else was tolerable.

I am now down to 10 mg and I am tired, but today I did take my kids to swim practice, take them for sneakers, then did light shopping. I was sucking wind by the shopping part, but this is also only my second day off narcotics also. Maybe that has something to do with the pian and fatigue.

As for the chest tightness, I can't tell if that's more abdominal realted since my skin is still so tight from the surgery. If I sit up straight the tightness does improve, so who knows.

At what dosage would adrenal fatigue be an issue if I was going to experience it? I really want to be aware of what to look out for in case it happens. As it turns out I am scheduled to go back to work a few days before I take the last of the prednisone. I hope I am not flat on my butt exhausted.
Posted 12/29/2011 9:55 PM (GMT 0)
I can't speak to the appropriateness of the length/pace of the taper as there are a lot of variables and "right" ways to do it. I did want to share that I always felt fatigued when going down a level regardless of the amount of change or how long in between steps. I believe that is pretty normal. I'm wondering if the chest tightness isn't related to anxiety? I can get pretty wound up sometimes and will feel tightness in my chest, etc as a result. Just a thought.

If you are at all worried, review the schedule with your doctor and discuss your symptoms. I hope you are feeling better soon!
Posted 12/29/2011 10:58 PM (GMT 0)
     I never experienced chest tightness while tapering prednisone.  Maybe you should have that looked into.  It may have nothing to do with the prednisone taper.

     I have full blown osteoporosis due to my extensive use of prednisone over the years.  Plus the fact that my GI doctor, when I was first diagnosed with UP in 1998, NEVER told me I was supposed to take calcium while on prednisone.  Maybe he thought I should just know that fact rolleyes .  Over the past several years, I have suffered three fractures in my spine.  The first one was from a severe fall and I believe anyone, even a person with good bones, would have fractured their back.  However, the last two, I wasn't even aware I had those fractures.  I had pain in my thoracic spine and my family doctor sent me for an MRI.  I went to a bone specialist and I was surprised he didn't push Reclast!  I cannot take Fosamax or Actonel because they give me upper gastric distress and I have had numerous dental problems.  The bone specialist just told me to read up on Reclast and to make my own decision.  I talked to a few people who had a few infusions and got very sick from it...so, no thanks, I will just stick to extra calcium.

Posted 12/30/2011 2:22 PM (GMT 0)
I think tapers can be very individual. You really should follow your doctors instructions BUT certainly communicate any issues you are having with them.

If you are in pain, don't suffer!
Posted 12/31/2011 12:50 AM (GMT 0)
Thanks so much everyone! You have eased my mind. Today I feel much better. I guess my body does adjust. I will be going down to 7.5 on Sunday, so I anticipate more of the fatigue, etc.
Posted 1/1/2012 5:32 PM (GMT 0)
Glad you're feeling better. It's so nice to be off pred! Just think, last taper ever (hopefully)!
Posted 1/2/2012 2:33 PM (GMT 0)
Oh good! Sounds like you are getting through it. Hopefully you are feeling better today after your step down. :-)
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