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Daughter w/extreme fatigue

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Posted 3/28/2011 8:31 PM (GMT 0)
Our daughter is currently down to 2.5 mgs of Prednisone. Tapering very slowly.  The last several weeks she has felt extremely tired and fatigued.  None of her symptoms have returned Thank God.  It's just the extreme fatigue that has me concerned.  I'm assuming it's b/c of the pred taper.  Also, last night she passed out for a few seconds.  Occassionally, she does feel dizzy.

What other things could be the culprit ?

TIA ~

Posted 3/28/2011 8:41 PM (GMT 0)
Oh yes, it's most likely the pred taper. I remember feeling very fatigued for quite some time while tapering. It might take her a few weeks even after the taper to start feeling better. Ask her doc about a Vitamin B-12 shot, or maybe have her start taking a B-100 vitamin; those really helped me quite a bit to regain some energy. Hope she feels better soon!

Posted 3/28/2011 9:58 PM (GMT 0)
I remember when I was tapering, I was so tired, I thought my Lyme disease had come back. It eventually went away and although I don't have the same energy level as I did pre-UC, I am feeling OK and can get things done.
Posted 3/28/2011 11:00 PM (GMT 0)
I am always very tired too. I am going to get my iron checked, apparently we could still have low iron even though we aren't bleeding. I hope she is feeling better after she's off the pred. How much longer does she have?
Posted 3/28/2011 11:43 PM (GMT 0)
Make sure to have her hemoglobin and ferritin levels checked.
Posted 3/29/2011 12:50 AM (GMT 0)
She might not have enough oxygen in her blood. That could explain the dizziness and passing out. It happens to me too, especially when I'm sick or have lost a lot of blood.

Get her blood checked out for anemia.
Posted 3/29/2011 1:25 AM (GMT 0)
My guess is that her issues are caused by the pred taper - but all the other things mentioned would be good to be checked. I don't know if you read my post about my son's exhaustion, but when we first went to the Dr. about it he had a bunch of bloods drawn to check for all kinds of things.

I am very glad her gut symptoms have remained quiet - that's a good thing, for sure!
I remember being very, very low energy when I finally got off the last bits of pred.

What is her activity level these days - is she trying to be up and about and doing her normal routine, or is she taking it easy, or is the fatigue forcing her to slow down.....? That might seem silly to ask, but I find that my teen is not always good at giving himself leeway for the fact that he has UC...
Posted 3/29/2011 2:06 AM (GMT 0)
My son was being weaned off Pred as well. I am glad to be reading this as I didnt know that fatigue was a side affect of being weaned off Pred.   Everyday he comes home from school, the first thing he tells me is how tired he is.   In the last 6 weeks we went  from leaving the hospital on 50mg pred per day to 40, to 30 and then down 5 mg every 5 days.  We were at 5 mg of Pred per day when he started having some symptons again.  they upped him to 10 mg again.  Poor kid is so broken out with horrible acne from the Pred.   We just got his labs back and he is still anemic, even after 6 weeks on Iron supplements.  Thankfully stool sample was negative for blood. hallelujah.   I never realized how Pred wreaked havoc on your body.    Hope your daughter is ok and feeling better soon .
Posted 3/29/2011 2:15 AM (GMT 0)
I am always tired as well. I take naps on my lunch break. Maybe her blood level is low? I would feel dizzy and would sleep for 11 - 12 hours a night when I was losing too much blood. Once I had the blood transfusion I felt much better.
Posted 3/29/2011 6:16 AM (GMT 0)

netty13 said...
Maybe her blood level is low?

Hence not enough oxygen in the blood. When there isn't enough red blood cells to carry adequate oxygen to the tissues, one gets dizzy, has blackouts, and has fainting spells. This happens to me a lot. A blood test will tell whether or not your daughter is anemic and what form or forms of anemia she has.
Posted 3/29/2011 12:14 PM (GMT 0)
Thanks everyone. She did have her bloodwork checked about 3 weeks ago. Everything came back normal. I'm thinking of taking her to an endocrinologist just to make sure everything is going okay with the taper. I've asked her GI for a RX for 1mg of pred so we can taper down even slower now that we're getting close to the end. He said there is no 1mg of Pred. But I could swear that there was. I guess the Endo. would know better.

She has been alternating between 5mgs & 2.5 mgs for the last week. Tomorrow she starts 2.5 mgs for another week and then after that not sure if we should alternate 2.5mgs & 0 OR see if we can get 1mgs of Pred.

Any ideas ?
Posted 3/29/2011 1:26 PM (GMT 0)
Not that you asked me, but I think it's just the nature of the beast in terms of how UC manifests itself.

I am not on Prednisone, still to this today, and refuse to take, even though it had been throw up to me on more than occasion. I am scared to death of the drug but i digress.
But UC just seems to have a knack for taking the wind out our sails some days and making us feel so down and out. It's an ongoing battle of gtf out of bed and make myself better, exercise and try to move around some, be productive, or i am just going to feel worse in the long run or later after laying in bed all day and doing jack.

Best wishes to you.
Posted 3/31/2011 12:17 AM (GMT 0)
I am so tired all the time. I can hardly function. This is my number on complaint about UC. I have had my blood checked and it comes back fine. I don't know but I understand how she feels. I think alot of people don't understand how tired you get. It is hard and you just want to sleep. I get brain fog and dizzy also.
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