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Daughter off Prednisolone but still has over exhaustion

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becky40790
becky40790

Hi, my daughter is five y.o., and was on Prednisolone for almost seven months. Though the time frame was only a few months originally, trying to get her wean off without causing withdraws was not as easy as they thought it would be. Her last dose was on 01/13/17, but it seems likes she's still exhausted. She goes to bed at 7:30pm on school nights, and gets up at 6:30am. I cannot really push for an earlier bed time at this point. I'm afraid to allow her naps after school because she won't want to sleep when it is bed time (even at a later time).

We have considered that dehydration is an issue since she's five and cannot be there every minute to tell her to take a sip of water.

Any one know why the exhaustion is still an issue?

A few notes:

*Her first dosage was 90mL/day in July 16

*Her last dosage was 0.3ml (1mg)/day in January 17

*She still on B/P medication (lisinpril) - reasons: control proteinuria and hypertension

*Strict Diet  - processed food and sugars are very limited

*Doctor has her trying for 2-20fl oz. water bottles for hydration (help prevent joint pain)

0 likes, 5 replies

5 Replies

  • rocky31676
    rocky31676 becky40790

    Posted

    This is because prednisone affects the balance of natural secretion of hormones. Doctors give this very sparingly and only in serious autoimmune conditions. If your daughter took more than 7.5 mg per day then it would affect the body. Moreover, there will be withrawl symptoms of fatigue, weakness, weigh loss and nausea. Theis happens becuase the adrenal glands are adjusting to an environment rom synthetic hormones given the body. It will take a few weeks or months to get adjusted.
    • becky40790
      becky40790 rocky31676

      Posted

      Thank you for your response. I kind of figure we are still dealing with the wean even as slowly as the doctor took it. Just seems like some days are worse than other.
  • natalie77410
    natalie77410 becky40790

    Posted

    Hi Becky,

    I was given 50mg/day and same thing happened to me. The doctor told me to reduce by 10mg each week but that made me severely sick with vomiting and all the HSP symptoms. At first I was going down by 5mg a week at high doses but now that I am down to 15mg/day I am going down by 1mg a week or less as dropping down any faster made the HSP symptoms quite bad. I am still getting abdo pain and rash but it's manageable at this stage. Hoping to get off prednisone ASAP because I hate the side effects. I am also on Imuran 25mg/day and the doctor is thinking about increasing me to 50mg/day if I am still getting HSP symptoms when I'm off the prednisone.

    I hope your daughter sees some improvements! Drinking lot's of water helps and I try to keep off my feet as much as possible. Has the strict diet helped with symptoms? My mum wants me to go on an anti-inflammatory diet but the gastroenterologist said it wouldn't do much help.

    Natalie

    • becky40790
      becky40790 natalie77410

      Posted

      It took us almost 7 months to get off due to the withdraw symptoms. A five year old with an attitude, but even more of an attitude with this medication...I locked myself in my bedroom one day since it was no use to try to talk to her. At one of the changes she got so mad that she threw a chair in her classroom. Thankfully the teacher was able to get her out of the classroom until I could pick her up. She's not like this anymore, but the slight extra attitude may not go away. LOL!

      She's on her water per doctor's order. The doctor sent a note to school, so she's the only student with a water bottle in the room. This is so she's not going in and out of the classroom too much to meet this need.

      The diet helps her out a lot. I found out that monitoring her food with what's good and bad for her helps reduce symptoms. There's actually a lot of fruits and veggies that help reduce inflammation overall in your body. Our doctors made us keep track of her sodium since the first day home, and off experience we found the day we allow her a treat or a few days, she had rough nights. Now that she's off the steroids, we just kept her on her fresh fruit/veggie/meat diet. The doctor no longer make us follow the previous diet, but the plan is to instill the knowledge she needs to make sure she keeps up with eating the right way. There's no knowing when the HSP will come back and when it does come back if it will cause her repeat kidney distress. A highly recommend getting the right foods for your body. It hasn't hurt her any way, other than her lacking the normal childhood foods.

      Thank you! I hope you're doing better as well!

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