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Really scared what prednisolone is doing to me :(

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Posted 12/4/2018 12:34 PM (GMT 0)
Hi everyone,

I am struggling so badly on prednisolone. I thought it would get better as I tapered but doesn't seem to be...
I started on 40mg for a week but was so shaky and anxious. I then did 3 days on 35mg, 3 days on 30mg (advised to taper more quickly by my consultant) then did 5 days on 25mg and am now on 4th day of 20mg. I am having severe anxiety, racing thoughts, feel depressed and cannot sleep at all. Keep waking in the night with racing heart and feeling sweaty. I'm so scared about what is happening. I suffer with severe anxiety anyway and am panicking I'm going to die because of this drug sad
Posted 12/4/2018 1:40 PM (GMT 0)
First, you're not going to die due to prednisone. What you are going to do is feel a lot better within a few weeks or less thanks to pred (it's rocket ship fast). Unfortunately, prednisone is like the "Devil's tic tacs," as you feel better but at a cost. Meaning you have a number of nuisance, temporary side effects while you're on it. Pred enhances emotional/psychological tendencies that we each have. So if you're normally an anxious person then it is going to be a lot worse while you are on the pred. Pred can give us wild mood swings, I went from euphoric, to angry, to crying within a 15-minute period of time and that's pretty normal for pred. Pred can make it difficult to sleep due to insomnia, rapid heart rate, and night sweats. At 20-mgs those side effects should get a lot less severe.

As I mentioned before, if you're taking a split dose of pred (half in morning and half later in the day) then ask instead about taking all in the early morning.

The budesonide-based steroids have a lot less side effects. That is Steroid-enemas, uceris delayed-release oral tablets, uceris foam, and endocort EC. You can always ask for those the next time, as they're 90% topical and only 10% systematic. Whereas pred is 100% systematic (and that systematic component is what gives us the awful side effects).
Posted 12/4/2018 2:18 PM (GMT 0)
Ribbon,

What other meds are you own? Are you taking rectal meds? They make steroid rectal meds that have less systemic side effects and treat your effected area.

If you really hate being on Pred then ask about going to a biological (if you’re not on one already). That could help you get off of Pred sooner.

Are you splitting up you Pred doses or taking them all at once?
Posted 12/4/2018 2:26 PM (GMT 0)
I'm taking them all at once in the morning. I'm also on mesavant 4.8g. Not really having any UC problems, just cannot deal with the side effects. I'm so sleep deprived and in a constant panic about my heart sad I thought the side effects would have lessened by now but still seem to be carrying on.
Posted 12/4/2018 2:33 PM (GMT 0)
Get an order for klonopin! I had to use it at night until I got down to 15mg of prednisone. It is very normal to feel very anxious with IBD and esp. on prednisone. There is no need to suffer like this so I suggest you have a backup plan for when you get severe anxiety. Klonopin helped me sleep and cope while on the prednisone.
Posted 12/4/2018 2:34 PM (GMT 0)
The other suggestion is CBD oil- I have the legal and the medical type and both work to help calm down. You can order online although the really good brands are expensive. Klonopin is cheaper.
Posted 12/4/2018 3:51 PM (GMT 0)
That's precicely why I suggest UCers to not become desperate and to try the topical steroids first.

Definitely contact your doctor....keep us updated..
q
Posted 12/4/2018 4:29 PM (GMT 0)
I wasn't really desperate just got given the pred straight away after diagnosis from my consultant. Dr has recommended beta blockers ...not much else
Posted 12/4/2018 4:29 PM (GMT 0)
So sorry! Pred was not my friend at all. It turned me into a living nightmare. I was having full blown temper tantrums (i am not normally an emotional person at all). On pred I couldn’t hold myself together. Ithe side effects are the worst! As much as I hated being on pred, it did keep me out of the hospital and allow me to funtction at work (although I think was in a brain fog, just sitting at my desk and drooling on my pants).
My GI had me start splitting the dose. I would do half at 6:30am and half at 4:00pm. This helped me a ton. I also took Phenegran at night. It was good at calming down my stomach and helped me get through the night.
Posted 12/4/2018 5:07 PM (GMT 0)
Thanks for your reply. Seems like so many people have a hard time on it. I've been an emotional wreck the whole time. One minute depressed. The next tearful or angry. I know I should be grateful bc they've pretty much 'cured' my uc symptoms for now but I'm not sure what's worse tbh, the uc or the side effects of pred.
Posted 12/4/2018 5:29 PM (GMT 0)
my vote would be pred side effects -
Posted 12/4/2018 6:11 PM (GMT 0)
It's the pred, plain and simple. it makes us all nutty, and gives us all of the symptoms you are describing.
Posted 12/4/2018 8:16 PM (GMT 0)
My docs generally avoid giving me pred because it is the only thing that can make me run to the bathroom more than the UC. That said, when I take it, my normally super-great blood pressure skyrockets, my cholesterol becomes comical, I turn into a hose beast with the people around me, my immune system rolls over and plays dead, and I change my nightclothes midway through the night, every night, because I soak them with sweat—which is fine because I wasn’t getting much sleeping done, anyway.

It is deeply unpleasant, but fairly benign on the short term. And almost everyone hates it. You’ll pull through.
Posted 12/5/2018 4:26 PM (GMT 0)
Thanks for you replies. I still couldn't sleep last night... so tired right now. Am going down to 15mg tomorrow. Anxiety is still really bad. The only positive thing is my UC is better.
Posted 12/5/2018 4:38 PM (GMT 0)
Can you ask for a prescription for some ambien to help you sleep, and/or some anti-depressant meds to help you through it? Anything that'd help. I know it sucks big time.
Posted 12/5/2018 5:07 PM (GMT 0)
Dr was reluctant to prescribe sleeping pills but did give me a low dose of amitryptiline? I'm just a bit wary of taking loads of medication and have bad experiences with ADs in the past. The beta blockers seem to be helping a bit.
Posted 12/8/2018 7:43 AM (GMT 0)
Pred kicks all our butts, no pun intended, even though it helps greatly. I am on four meds to counteract side effects so I feel your pain. Things will improve though once you do manage sleep and get rest. Hang in there.
Posted 12/8/2018 6:31 PM (GMT 0)
Thanks smile I'm down to 15mg now. Beta blockers seem to be helping, got more sleep last night. Feeling quite tired though. Which meds are you on to counteract the side effects? It's so hard isn't it? What side effects have you had?
Posted 12/8/2018 8:07 PM (GMT 0)
I regularly take an acid reducer, am on an antibiotic to avoid skin issues, and take blood pressure and heart medications. For me, the weight gain has been the worst. I am so much bigger and struggling to do basic tasks. I just scheduled surgery yesterday.
Posted 12/10/2018 10:58 AM (GMT 0)
I'm still on 15mg.had two nights where I slept much better but last night couldn't sleep again and had night sweats. Is this normal while on pred/tapering? I'm so fed up.
Posted 12/10/2018 11:38 AM (GMT 0)
Sweating in general has always been a thing to me with pred. Same with irregular sleep or difficulty sleeping. Keep in mind it will take time for some side effects to subside.
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