The Misery of Fatigue... Is this the new normal? And how do you all cope?

Hi All

I was diagnosed in May this year with pancolitis so i'm really new to this. I started on 60mg prednisone. Tapered down and stopped end of june. Started bleeding, skin rashes and had puffy ankles and knees within days after stopping. Obviously the bleeding i was familiar with but the rest was new. Anyway, i could see my Gastro doc so my regular doc put me back on 30mg of sterioids which finished (after tapering) about 10 days ago.

Within 4-5 days of stopping i got diarrhea (well, lets say loose stool), then mucus and repeated need to go started again, and the last 3 days, some bleeding. Not a lot. Not dramatic like before. But its there.

The overwhelming symptom for me before (aside from the bleeding) was the fatigue. And now, although the rest is nowhere near as bad as before, i'm back to being utterly exhausted. Like i've taken sleeping tablets, but all the time. The day before yesterday i just slept all day. Yesterday i forced myself to do stuff, but 7pm i'd fallen asleep upright on the sofa, and as a result today i just feel too tired to even cook.

Is this the new 'normal'?

I dont think my symptoms are dramatic enough to be called a flare. Obviously with the steroids i felt great and was a ball of energy. Haven't felt that well for months as when i was on the steroids.. but now i've stopped this fatigue is unbearable. I'm going to lose my business if i can't manage a whole days work. How do you all cope?

I eat well and correctly. I have pleasure horses so am doing some physical activity every day, although not up to anything that i would call strenuous activity at the moment.

None of my blood tests, even when i was really really poorly, showed any other problems or deficencies - so is this just "normal"?

Sorry, i've rambled on a bit!

Hi, yes sorry i managed to miss that out (can i put it down to fatigue ;-) ). On 4g mesalamine granules for 3 more months. I assume its that keeping the bleeding relatively at bay!

I agree with noodles in that your maintenence meds arent enough..you need something else to support the mesalamine. This is important and could even be why you are experiencing such exhaustion as we all react differently.

I honestly believe that once you are on sufficient drugs the fatigue will go away.

I was very tired after I got off of Uceris for a couple of months after I stopped taking it. Give it a little more time.

Oh, that's a good point the others have made. Tapering pred absolutely causes soul-sucking fatigue.

But still, you need to get on a better maintenance plan as well.

Try to think of this as temporary until you have reason to be believe it is not

Id say you're still flaring. You should have blood testing regardless since you have had other issues since off the pred.

q

A remission is an absence of UC symptoms: no urgency, no blood, normal bm frequency (just a few a day), and just normal looking bms. If you have any UC symptoms then you are flaring. You know you are in a remission and there is no reason to ask "am I in a remission?".

Often our doctors confirm we are in a remission through something like a CRP blood test, FCP stool test, flexible-sigmoidoscopy, or colonoscopy. As we do best long term when we are in a deep/quiescent/histological remission.

Thanks both for the info. I can cope with the bleeding and urgency (i work from home so rarely far from the loo).

It's just the fatigue to shake, which sounds like it might just be coming off the pred, so i'll give it a few weeks.

I already have a check up appointment booked for 27th September. I'll hang on till then. Thanks for your time... it's genuinely appreciated. And i do feel reassurred.

I'm off in search of the coffee pot and some red bull!!

I am right there with you my friend. I'm glad you posted this because this is he exact kind of thread I was looking for. I'm coming down off of Prednisone after being on it for a good 7-8 months. I have finally tapered down to 5 mg after being at 40 for most of that time and today I've slept for a good 2/3 of the day.
I'm sure the length of Prednisone use has something to do with how long it takes before your own cortisol levels even out... But does anyone have a ballpark on how long it takes or how to get more energy not by way of caffeine?

I'm also suffering from extreme fatigue and I'm currently on 60 mgs of Prednisone. I should have a ton of energy but I have none!!! It makes it really hard to concentrate and function at work. Ugh.

I hope this lets up soon, I don't know how much more I can take.