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Newly diagnosed and struggling on prednisolone

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Ulcerative Colitis
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Posted 11/21/2018 1:49 PM (GMT 0)
Hi all,

I was diagnosed with uc last week and am feeling a bit overwhelmed by it all. Have been put on prednisolone started at 40mg tapering by 5mg/week. Basically, I feel horrendous. Keep feeling very jittery and shaky and on edge, just generally weird, not able to function much. Could this be the steroids causing this? I'm really scared and don't like the feeling at all sad
Posted 11/21/2018 2:28 PM (GMT 0)
Those are classic steroid symptoms. Intensity fades for some after a few days to a week. But some have constant side effects.

The bad news is that unless you are also started on something non-steroid to treat the inflammation, things will flare up again as you taper.
Posted 11/21/2018 2:57 PM (GMT 0)
Ditto classic prednisone side effects. I think we're all frenemies with prednisone (it's both a love and hate thing). It is wonderful in working very fast to suppress the very worst of an UC flare but is awful in giving us many nuisance side effects that we dread. Expect to have things like insomnia, nightsweats, bursts of energy, wild mood swings, rapid heart beat, an insatiable appetite, and it tends to amplify existing philological tenancies (will amplify anxiety, depression, or other such tendencies). Pred is the kinda drug that will make you do a thorough home-cleaning at 2-am in the morning (can't sleep and have boundless amounts of energy that must be used) lol. Just remind yourself that pred and its nuisance side effects are only temporary, and that if you're a bit loopy and feel off then pred 100% gets the blame.

Ditto you MUST be given a maintenance medication, usually a mesalamine-based drug like asacol/lialda/pentasa. Pred is like crutches, it buys you time and helps you get by while you heal fully using mesalamine. Mesalamine is safe for long term usage, most do not experience side effects from mesalamine as it is very well tolerated.
Posted 11/21/2018 2:58 PM (GMT 0)
Yes, those are classic prednisone side effects. Is it helping your UC at all?
I do agree that you should be on something else other than pred, some kind of 5ASA would be a good place to start as well as retention enemas. I am also very sensitive to prednisone and I cannot think or sleep if I take more than 30 mg. Hang in there!
Posted 11/21/2018 4:59 PM (GMT 0)
Thanks so much everyone. Yes I'm starting on mesalazine (mesavant XL) tonight and salofalk enemas nightly- are these good? Well since I started taking pred, my pain has improved and having much less urgency during the day. I'm still having 2-4 bms in the morning but these are becoming more solid and much less blood so I think it is helping somewhat but I'm not really sure what to expect in terms of improvement- how quickly do these things work? I'm really struggling with the side effects, I'm sitting here shaking and having a hot sweat as I type this sad
Posted 11/21/2018 5:58 PM (GMT 0)
Yes, Mezavant pills and Salofalk enemas are the recommended approach. It sounds like you are on the right path, and starting to show some improvements already, so stay the course and I bet you'll continue improvement. How long until I'm 100% normal really is a big unknown and vary's wildly. Internal healing is a very slow process, and there is no instant-gratification. Expect a month at bestcase and up to several months. It really depends on how severe your inflammation is and how extensive it is, as the larger area and more intense inflammation inherently takes more time to heal than more mild and limited inflammation does. The other variable is that your medications are strong enough, as there is a lot of initial trial-and-error in treating an UC (sometimes it takes multiple attempts at meds and dosages to get it right).

Certainly mention the side effects to your doctor. You can ask whether it would be appropriate to switch you to a topical, delayed-release steroid. You could ask about Entocort EC/Clipper/Uceris/Budesonide pills instead of prednisone. You could ask for steroid enemas instead of prednisone. All of those aforementioned medications are 90% topical and 10% systematic. Pred is 100% systematic, and that systematic part is what gives you the side effects. The other mentioned medications are better for mild to slightly moderate inflammation, so your doctor might only prescribe those if you meet that criteria. If you have really severe inflammation then pred is mostly unavoidable.
Posted 11/21/2018 6:07 PM (GMT 0)
You know...if you've only been on 40mg for a week, it can be dropped. 2 - 4 bms daily doesn't warrant prednisone in my opinion.

I suggest you call your doc and see if you can drop it....if you are wanting that. If not, then stick with it till totally off it.

What is the extent location of your UC?
What is the mesalamine dosage of Salofalk?

Welcome to the forum,
q
Posted 11/21/2018 7:36 PM (GMT 0)
my consultant said left sided moderate uc. I'm not sure of the dosage of salofalk.. think it said 1g on prescription and maybe 4.8mg of mezavant. Thanks everyone
Posted 11/29/2018 1:19 PM (GMT 0)
Need some more advice/support. Am now on 25mg pred and taking 4.8g mesavant daily. The blood has completely stopped and am having 2/3 basically normal bms a day. The pain had virtually gone too but just in the last couple of days I'm getting some bloating and discomfort and sort of burning pain which is worse when sitting down plus some back pain. I suffe badly with anxiety and am getting stressed that things are getting worse. I'm just new to all this and don't know what to expect.
Posted 11/30/2018 1:20 AM (GMT 0)
Don't forget to take calcium while you're on prednisone
Posted 11/30/2018 1:17 PM (GMT 0)
Bloating is common with prednisone, reduce your salt intake to mitigate bloating some. Not sure on the pains, pred usually reduces them. Could be trapped gas, could be a hemorrhoid.
Posted 11/30/2018 4:34 PM (GMT 0)
Thanks the pain is much better today. I am just really struggling with major anxiety and panic attacks... Not sure if this is the pred? I'm really struggling to manage. Heart keeps racing and feel shaky and then get even more panicky sad
Posted 11/30/2018 5:24 PM (GMT 0)
I can guarantee that it's all of the Prednisone. It has so many awful side effects and will have you feeling all sorts of ways. But as others have said, they'll use Prednisone to calm down your flare for now, but ultimately you're going to need a secondary form of treatment, as Prednisone cannot be a long term answer to your flare.

Prednisone took a wrong, dangerous turn for me. I can't go back on it. They use Tacrolimus for me. I had minimal side effects and it worked wonderfully. Only downside was having to get weekly blood tests to ensure my levels were okay.
Posted 11/30/2018 5:40 PM (GMT 0)
Yes, prednisone is great at exacerbating existing physiological tendencies (if you tend to be anxious then pred will amply that tendency). Prednisone (at high dosages) can make you heart race.
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