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So Drained, is this normal?

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Ulcerative Colitis
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Posted 4/21/2014 4:58 PM (GMT 0)
Not sure if anyone remembers, but I recently was in the hospital, got out on April 11th. I was there for 15 days...

They have me on 40mg prednisone and 150mg of Imuran, and I feel like I have zero energy, everything tastes like cardboard, my mouth is dry as hell inside, no matter how much water I drink it's like it doesn't make a difference...

When it comes to sleep, I'm lucky if i even get 6-7 hours. Yet I constantly feel like just laying down and sleeping.

I'm pretty down about all of this. I can't believe I was hospitalized for 15 days.

Not like I could work right now anyways, but I feel so useless. I'm 26, I feel like my life is passing me by. I'm sorry I sound so blah. But I am and I've been fighting with myself since I got out of the hospital. Will this just happen to me again down the road? I know it's a lot to do with the meds. Last time I was on prednisone the only thing I really remember is eating eating eating... but it's not like that this time around, since I can't taste anything...

I have been looking it up like crazy, but I'm just wondering if anyone personally has been on the drugs I'm on, is this all normal?
Posted 4/21/2014 5:19 PM (GMT 0)
not anything I can say but I UNDERSTAND! same boat , feeling the same way. Recently out of hospital too. now  prednisone 30mg, 6mp100 mg and now just started humira. I don't recall ever feeling this crappy/anxious either but I was taken off guard by this flare in the first place having been on meds and still flared so it got me down mentally & physically. ive been trying to make myself do some light yoga and relax ,get outside just to sit and maybe get some sunshine and remind myself to be as positive as possible . SO FRUSTRATING !! we WILL survive though!! but overall id say yeah normal feelings for being sick , young and blah feeling , after hospital ughs, and meds (pred)

heres to wishing for a better day SOON

Posted 4/21/2014 5:21 PM (GMT 0)
That dose of Imuran will exhaust you initially- I took 150mgs/day for years, & had to take it all at night, before bed. Do that, & you'll sleep better, you won't be nearly as spacy, foggy, etc. It is normal to feel like this upon starting that high a dose of Imuran. And 40mgs isn't that high for pred, really. I do remember your recent posts- you've been thru a lot! Amazing though- after my surgery I was in the hospital for 4 days, you- 15?!?!? What?!?!? Crazy. I hope things look up for you ASAP. Try your med before bedtime- maybe divvy the pred up into 2 doses, one AM, one late afternoon, then the Imuran right before bed.
Posted 4/21/2014 5:30 PM (GMT 0)
Thanks for the replies :)

I do take the Imuran before bed, but am curious if because I take that big of a dose, can it carry over into the next day? A few days even felt like getting sick and had to take gravol but quickly learned to eat something before having the Imuran. Also wondering if i possibly have oral thrush from being on them, but my mouth is slowly clearing up so maybe not.

I think I'm depressed honestly about it all. Like hospital ughs! exactly!

Eva Lou your a trooper! only 4 days... If I ever have to go down that route I hope it goes smoothly for me.
Posted 4/21/2014 5:48 PM (GMT 0)
Oh my god, I never took Imuran but I did take 6MP briefly... I say briefly because the fatigue I experienced on it was UNREAL. I remember dragging myself out of bed and all the way to work, sitting down at my desk, and just couldn't... do... anything. I think I stared at the keyboard for a while trying to will myself to pick up my hands and type anything and finally gave up and went home and went back to sleep. I've been through most of the drugs and plenty of surgery but nothing comes close to the fatigue I had on 6MP. My hat is off to people who find a way to deal with it or get through the adjustment period. I couldn't do it.
Posted 4/21/2014 6:02 PM (GMT 0)
I took max dosage of imuran for around a year. The first three months of it were as pluto described, but worse for me. It was one of those drugs that was actually worse than the disease itself, which is saying a lot.

I had the following symptoms while taking it: severe depression, constant metallic taste in mouth, screwed up my stomach acid (had to take max dosage of prevacid), felt tired 24/7, no appetite, loss of libido, constant nausea, late night vomits, hair loss, etc. I felt like a chemo zombie on it because it is more or less a chemo drug.

I took myself off it because it wasn't necessary. I found out later on that it was the prednisone that brought me into remission. The imuran was prescribed just so the doctor "covered all his bases", so I can't blame him now because it was a pancolitis diagnosis per the colonoscopy.

I would highly recommend that you discuss with your doctor about discontinuing it if it is causing quality of life issues.
Posted 4/21/2014 6:07 PM (GMT 0)
Ah, so I'm not the only one for sure! I don't know if I can stick with the Imuran. I have an appointment on the 24th that I made just for these reasons (especially the mouth issue)

The other day it took me 20 minutes to find the will to want to get up and get the remote for the TV. LOL which just isn't like me, even when I was flared up really bad I tried to get out and do stuff and get things done. When I do make it outside to get chores done, ever since I got back home I will CRASH. I'm good till around 3-4pm and then I don't want to do anything at all.
Posted 4/21/2014 6:09 PM (GMT 0)
Uc flare ups can cause fatigue. How are your symptoms? Uc can be incredibly difficult emotionally and physically. But we all get what you're going through as many of us have been through very similar experiences.

Hopefully you get the right balance of meds soon and find remission (an absence of symptoms). Much of that process is trial and error, unfortunately. Uc is characterized by periods of remission and flare ups (where symptoms return). So, yes it can happen again.
Posted 4/21/2014 6:17 PM (GMT 0)
I know it's the prednisone that got me out of this flare for sure, today I have gone 3 times, which is the most I've had since I came back from the hospital. Would like to see it more formed, but there is no blood. I do still have the urgency. Like when I have to go I have to GO. My GI isn't a fan of keeping his patients on pred for a long amount of time, so I am on those until mid june.. Part of me is scared to see all of my symptoms come back. Not stuck in the bathroom at least for the time being, or having accidents. I'll enjoy it while I can :p
Posted 4/21/2014 6:26 PM (GMT 0)
Try halving the Imuran dose, or even cutting it by two thirds, and see if that makes the fatigue better. It won't get into your system any faster if you take a high dose, so it's fine to start off on a lower dose. I don't remember any fatigue (no more than what I had already) from 6MP or Imuran, but I was really nauseous to begin with. Starting on a low dose and working my way up helped me get through that initial period.

Low dose Imuran (the low dose part is important) and allopurinol is a combination which can reduce toxic side-effects while maintaining the effectiveness of Imuran. You could also consider asking your GI to try that.
Posted 4/21/2014 6:32 PM (GMT 0)
You should ask your GI about taking your imuran twice a day instead of all at once. A dr from cedars who researches the bodies' reactions with imuran, Remicade, etc told me that it can actually help with the metabolizing of the drug in the body.

I remember having a lot of the problems you're describing when I was on 100 mg a day. By the time I went up to 150mg however, I was splitting it to 75 mg twice a day (once in morning, then at night, about 12 hours apart each time) and never felt any of the major increased side affects at that point with the increasing of the dose.
Posted 4/21/2014 6:33 PM (GMT 0)
I will mention it to him when I see him, they did have me on just 50mg in the hospital but they only did that for a couple of days and then put it up to 150mg.
Posted 4/26/2014 8:39 PM (GMT 0)
So a bit of an update

I've still been feeling really run down, its persistent and I'm still not entirely sure what it is. I got my Gi to check my mouth for thrush. Nope. Thinks I can't taste well and have a dry mouth from the prednisone. Mentioned to him that I can't sleep well, so he gave me a 30 day supply of Zopiclone 5mg. Yesterday was my first day down to 35mg of prednisone. He told me last weeks blood work came back good, and I went yesterday before I saw him so he hadn't received that one. The only thing I didn't mention is probably the one thing that's giving me so many problems - Anxiety. But I just figured a GI can't prescribe anxiety meds... looking back he handed over a prescription for sleeping pills easy enough, I'm kicking myself in the butt now.

Having all this time on my hands/being sick/told by doctors I need to take time to get better is really getting to me. I think making an appointment with my family doctor is in order, even though it's so annoying making one with her because it will probably take a month to get in. But I don't think this feeling is going away any time soon, I'm stuck on the prednisone till mid-june.

My face is so fat now, I have dark circles around my eyes... I got the bigger gut. I hate looking at myself.
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