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Crohn's Disease Forum » Treatment » Predisolone/Humira side effects help (rant)


06-28-2017, 02:20 PM   #1
Hollaka79
 
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Predisolone/Humira side effects help (rant)

Hi again ☺️
So I'm currently battling the pred yoyo diet. Have been on off pred for almost a year now, can't get below 15mg before I start flaring again. I've spent the last couple of months basically at a high dose (40mg) & am now coming down to 35mg for two weeks whilst I wait for the Humira to be delivered/set up. Then will continue to taper I guess as the Humira kicks in.
Problem I'm having is the side effects of the pred are getting ridiculous. It looks (to me & im seeing my gp tomorrow to confirm) that I've got Cushing's syndrome cos of the pred. But I'm not sure as symptoms/side effect of pred are very similar. But I've found this past week I've felt so rough, my face & tummy are swollen, my mood is just blah (up down wanna cry wanna scream wanna sleep), am completely exhausted & have no energy to function (which sucks with two children to look after) I'm bruising really easy, purple spots have appeared on my boob & leg for no reason, have an annoying cough & shortness of breath & I feel like my head is going to explode & heart burst out of my chest. My GP is seeing me tomorrow to check me over but he said there's not much he can do as it's most likely the steroids & as I can't taper just yet I have to deal with it.
Does anyone else have any ideas on how to cope with this? Or anyone have Cushing's syndrome & take anything to help it? Also with the Humira do you feel better straight away? Does the Humira cause similar side effects to the pred? Am so sick & tired of feeling sick & tired & just want to feel better (as I'm sure we all do)! Sorry this is kind of a mismatch post I just didn't wanna fill up the forums with all my medicine questions.. Sorry also for the rant. It's been a rough day 😞
06-28-2017, 02:32 PM   #2
ronroush7
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I was on Humira for a while and didn't have any side effects. I have heard with some people it can take up to six months to work. Hope you feel better soon.

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06-29-2017, 02:57 AM   #3
Hollaka79
 
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I was on Humira for a while and didn't have any side effects. I have heard with some people it can take up to six months to work. Hope you feel better soon.
Thank you. Here's hoping it works quicker 😕
06-29-2017, 10:40 AM   #4
ronroush7
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Thank you. Here's hoping it works quicker 😕
Amen

06-29-2017, 11:14 AM   #5
Tuff
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Steroids work great for a flare, but the side effects can be awful. It's been six weeks since I got off, and the facial swelling is starting to come down. I bruised easily, and put on ten pounds because of the increased appetite. It stopped my flare right away though, so that was the price to pay. Hopefully you can get off soon.
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06-29-2017, 03:11 PM   #6
Hollaka79
 
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Here's hoping. Ended up at Drs today as showing signs of Cushing's syndrome & now blood sugar is high so having to go in every few days for blood sugar test, Dr says again another side effect of steroids (and also Cushing's). My face is so swollen now it actually hurts my neck to lay flat, I'm covered in little purple stretch marks & bruises & my moods are yukky! Dr gave me diazepam to help with the anxiety levels but don't like taking unless desperate as have my two kids to take care of. I said to Mum today I wish they can find a med that works on the flare like the steroids do but without the horrid side effects. It's a double edge sword. I'd take the side effects over the crohns flare every time but it just sucks that we have to go through that choice... 😞
06-29-2017, 05:38 PM   #7
my little penguin
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Humira typically takes 3 months to be fully effective
But can take up to 5-6 months
You may want to see endocrinology they handle Cushing syndrome a lot

You can handle flares with een
Exclusive enteral nutrition no food formula only for 6-8 weeks (een) this is as effective as steriods
Has none of the side effects of steriods but all the Benefits

Adukuts use boost or ensure
Some need semi elemental such as peptamen or peptide

Others need amino acid (elemental based -tastes foul ) such as vionex

Good luck

Ds has done een multiple times and been on humira for over 5 years no issues -this included going through elementary school around all the coughs and colds etc...
All good
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06-30-2017, 03:08 PM   #8
Hollaka79
 
Join Date: May 2017
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I had an elemental diet throughout my childhood (via an NG tube as you're right it's foul!) I saw my dietician on Tuesday & she's sending me out samples of nutritional drinks to see which ones I like best. Hopefully they'll be a nice flavoured one. I can generally tolerate ensure so fingers crossed.
Under my GP for Cushing's but not doing much as say it's all steroid related & once steroids stop it'll get better. They're checking my sugar levels every few days & checked my thryoid today so will see what that comes up with.
It's all so annoying, and 3 - 6 months wait for Humira to work is rough! I really just wanna feel better 😞
06-30-2017, 03:19 PM   #9
ronroush7
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I had an elemental diet throughout my childhood (via an NG tube as you're right it's foul!) I saw my dietician on Tuesday & she's sending me out samples of nutritional drinks to see which ones I like best. Hopefully they'll be a nice flavoured one. I can generally tolerate ensure so fingers crossed.
Under my GP for Cushing's but not doing much as say it's all steroid related & once steroids stop it'll get better. They're checking my sugar levels every few days & checked my thryoid today so will see what that comes up with.
It's all so annoying, and 3 - 6 months wait for Humira to work is rough! I really just wanna feel better 😞
I hope the best for you.

07-01-2017, 10:52 AM   #10
Hollaka79
 
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I hope the best for you.

Thank you
07-01-2017, 10:54 AM   #11
ronroush7
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