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Pred Withdrawl - need to vent

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Posted 9/29/2012 2:37 AM (GMT 0)
I am HURTING. All over. My right knee and ankle feel like I injured them (although that can't be the case as I'm not allowed to actually DO anything yet). I hobble when I walk because the knee, ankle, and bottoms of my feet plane hurt. My left elbow feels like it has tendonitis and I couldn't close my right hand for three days. My body aches like I have the flu, but I really don't.

I'm pretty sure it's pred withdrawl. I had my colectomy on Aug 30th. I went in to the hospital at 40 megs of pred and left 5 days later at 20. In between I was on IV steroids at a dose in between. I had never had a drop that fast! But, it didn't seem to hurt me at all

I had been on 40mgs for two months, 25 mgs for two months before that, and up and down for several months before that. I'm currently on a 5mg drop every ten days (starting at the 20). I'm now at 10 megs and have been on this dose for 4 days. I feel like I should be feeling better after four days, not worse. I'm on the lookout for actual adrenal fatigue but I'm pretty sure it's the standard withdrawl. If I don't start feeling better by Monday, I'll call the surgeon's office and talk to them about extending the dose period or dropping more slowly.

I just wanted to whine. Thanks all!
Posted 9/29/2012 3:59 AM (GMT 0)
I have had 100mg and did large chops. I came off solumedrol once at 120mg pred one day, 60 the next. The reason you chop large when the qty is high is because your body only produces 8 mg per day. You better not chop anywhere near that number. I have come down with multiple chops too fast to stop the muscle wasting and get back in the gym only to get adrenal shock which is really unpleasant.

So now I am at 20mg and I started at 40mg 4 weeks ago.

My plan for a smooth landing to zero is to not take more than 8mg at any time during the day. So I had the doctor order up 5mg tabs for part II of this taper and I take one every 6 hours to get to 20mg per day. I am going to keep spreading it out at 15 and 10 too with a razor blade. The hope is that the adrenals will start waking up earlier in the taper and be fully contributing when I go 5.0 / 2.5 / 0.0

I am also going to keep taking librax, mebeverine, sulfasalazine until well clear of the flare. I will be good for another 2 years before I breakdown again if the tempo since this started in 2006 continues.

Post Edited (aguywithuc) : 9/28/2012 10:23:55 PM (GMT-6)

Posted 9/29/2012 4:00 AM (GMT 0)
:( Oh no....it does definitely sound like it's from the withdrawal. I guess people have different reactions to the taper. For me, it was migraines and adrenal fatigue and absolutely no appetite, but then again, I haven't had a colectomy before. I started on 40 mg but started withdrawl symptoms when tapering from 20 to 10. I'd definitely call the doctor's office regardless of whether you're feeling better on Monday or not. Hope you feel better soon.
Posted 9/29/2012 5:26 PM (GMT 0)
Ugh! At 10mg is when all my problems began around.... pure hell ! Had to go up a teenyweeny bit and am still waiting to be able to taper this time from 10mg down it will be in 1mg increments. Good luck! Too baad ur dealing with pred crap vs getting on with ur new life ! Soon enough though!
Posted 9/29/2012 6:05 PM (GMT 0)
aguywithuc - thanks for the chops explanation. I figured it had to do with the normal amount of your body produces.

It sounds like below 20 is the "danger" zone (which makes sense). I want off so I hope I don't have to go with small increments! But will if I need to. Maybe I need to split up the dosage throughout the day.

SS0000 - Did you have additional issues other than body aches.

It's funny. I'm actually in MORE discomfort now than I was the second week post surgery :(. I have been getting some headaches (definitely not migraine level) and my appetite is funky since the surgery anyway. I've noticed I've been losing more hair the past week as well. But I don't know whether to attribute that to post surgery diet, surgery trauma, or pred.

Thanks for the vent session and your input!
Posted 9/30/2012 3:18 PM (GMT 0)

ActiveUCer said...
aguywithuc - thanks for the chops explanation. I figured it had to do with the normal amount of your body produces.

It sounds like below 20 is the "danger" zone (which makes sense). I want off so I hope I don't have to go with small increments! But will if I need to. Maybe I need to split up the dosage throughout the day.

SS0000 - Did you have additional issues other than body aches.

It's funny. I'm actually in MORE discomfort now than I was the second week post surgery :(. I have been getting some headaches (definitely not migraine level) and my appetite is funky since the surgery anyway. I've noticed I've been losing more hair the past week as well. But I don't know whether to attribute that to post surgery diet, surgery trauma, or pred.

Thanks for the vent session and your input!

Just layed out all my 10 mg's and all my 5 mg's. I have enough for :

15 per day starting tuesday
10 per day next week
7.5 per day week after
5.0 per day week after
2.5 per day week after

Just cut them in half, with razor blade and slow pressure they cut evenly.
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