HealingWell
Search Close Search
☰

prednisone woes

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/19/2011 8:06 AM (GMT 0)
History: dx with ibd undermined at she 12, now 23. Had multiple flares requiring prednisone but once feeling better I always opt for the no drug route. Now after undergoing several surgeries for kidney issues my ibd (which i believe to be crohns) symptoms r back with avengance.

I am on day one of prednisone tapering dose to tide me over until I can get in to the GI...and Im already remembering why I hate the drug so much. Im already having insomnia, horrible indegestion/reflux (although a problem in the past was not a current issue for this flare), severe nausea (i wish id throw up so id feel better!), and increased appetite. On an up side my diarrhea has decreased today or rather switched to only expelling mucus/small amount of clear/yellow liquid. Still having the urgency issues even though I seemed to be all pooped out.(after going 30+ times for 2 1/2 days) I just feel awful and after all the kidney issues I feel my body is just run down after this. And now I cant sleep? Oi. Any tips on combating these awful side effects? I took Tylenol pm to hopefully get some rest and only dozed off for an hr.
Posted 8/19/2011 8:29 AM (GMT 0)
Hiya. I am on prednisolone too. I found when I was on the initial high dose my sleeping was so disturbed. I stopped the caffeine. I try and burn off as much excess energy as possible by swimming in the evening. I would have a hot milk/chocolate. And most importantly get the room temp as comfortable as possible.
Even when I would wake in the middle of the night I would lie calm and still with my eyes closed. Eventually I would nod back off. I didn't revert to meds etc. Oh and I stopped eating sugar or sugar replacements for a while.
Hope that helps and fingers crossed someone a little more knowledgeable will be along soon.
Hope you feel better soon, I know the lack of sleep can make you feel worse!
Xx
Posted 8/19/2011 2:01 PM (GMT 0)
Whatever you do be sure to take the Pred as early in the day as possible. For example, if you wake up around 4 am take the Pred then, that way it will help to avoid some of the insomnia. You should try to take it with some toast too to help with the GERD symptoms. You can also call the doc who prescribed the Pred to give you some Prilosec to take while you are on it. That will help with the GERD symptoms. Or you can just buy it over the counter too. Hope the Tylenol PM works to help you get some rest. Hugs!
Posted 8/19/2011 10:04 PM (GMT 0)
Thanks for ur help. The instructions he gave me for the prednisone was splitting the doses in half so initially 3 10mg in the am & 3 10mg in the pm.
..eventually getting down to just 10mg in the am. Obviously the night time doses would disturb sleep? I find myself not very tired today despite only getting 3 hrs of sleep and as my son naps (a very rare event in itself) im unable to fall asleep with him. Im trying to more bland while im experiencing such discomfort. I made an apt today with the new gi so if I find myself unable to deal with the reflux and insomnia until next Thursday I will be giving my general dr a call for help. Looking forward to getting things in order :) the diarrhea is back today so no help with that yet. And although I was fearful of gaining weight this time around with pred that doesn't seem to be a concern as I've lost 7 lbs in the last 2-3 days alone :( just hope im not a stick figure with a round swollen face when this is all said and done!
Posted 8/20/2011 8:23 AM (GMT 0)
My Dr used to give me triazolam to help me sleep until the side effects settled down (about a week).

Hopefully as you taper good sleep patterns will come back :)
Posted 8/20/2011 2:02 PM (GMT 0)
I NEVER take my Pred in split doses. I always take it once a day and as early in the day as possible. Thats why you are having so much insomnia. I would just stay on the once a day dosage and see if that helps. Hugs!
Posted 8/20/2011 2:30 PM (GMT 0)
Thx...nanners can ask y the drs prescribe a split dose esp if they know it causes such insomnia? Im Leary of changing my schedule to other than what's prescribed (goody to-shoes like that?) because I feel there must be a reason. But after the second day in a row of only 3 patchy hrs of sleep with a 2 yr old, hubby who's deployed, and well a life that won't stop just cuz I cant sleep...im willing to try it for sure. I just hate that its sat or id call my dr for advice. Hmph.
Posted 8/20/2011 3:04 PM (GMT 0)
I'd always speak to your doctor first, but I'm with Nanners on this. I only ever take pred as early as I can, and only ever in a single dosage. I've just tapered off it but the side effects are horrible when you're on a high dose and I have a lot of sympathy for you. Check with your doctor why they prescribed a split dose, but make sure you tell them about the insomnia and other crap that it's giving you. Pred is a tough drug but it can also be a really effective one.
Posted 8/24/2011 11:36 PM (GMT 0)
If possible, take the Prednisone in the a.m. with breakfast. I found that by taking it in the p.m. always kept me awake. Now I take it with breakfast (no later than 7:00 a.m.) and the insomnia is resolved.

Also try some lavender baths, the lavendar helps to relax your body. I didn't like tylenol pm as it always makes me drowsy the net day and didn't do much to put me to sleep.

Good luck.
Posted 8/25/2011 4:49 AM (GMT 0)
pred sucks no matter what you do with it...i've been on and off for years...my doc is pissed off that i'm still on it but every time i get down to 10 mg or so i flare and have to bump it. my wife calls them my a-hole pills becasue of what they do to me mentally- also make me very emotional- i tend to cry a lot...sleep is non-existant and i'll make a 2nd or 3rd dinner in the middle of the night...if it weren't for crohn's i'd weight 350 lbs...right now i'm 6'2" 200 lbs...BUT the pred does help so it's my go to since nothing else seems to work consistantly...
Posted 8/26/2011 6:16 AM (GMT 0)
Even on 200mgs of Trazodone a night, which would typically knock me out till the morning, I could not for the life of me sleep on Prednisone. It made me severally thirsty, literally my glass of water I used for the day was a gallon of spring water! I would definitely talk to your Dr. about taking your whole dose in the am, as early as possible. Maybe see if they can prescribe you a sleep med or an anxiety med to take the edge off for now. Sometimes just my Klonopin will give me a rest and it's got a shorter half life than say, Ativan.

Good luck on getting some ZZZ's!
Posted 8/26/2011 10:14 AM (GMT 0)
Thanks! Im in the hospital right now for kidney stone/ureter stricture so here in the hospital they switched it to one does in the am. Still am not sleeping but I've also had two surgeries the past two days so im in a lot of pain im addition to a flare.
Posted 8/26/2011 7:54 PM (GMT 0)
Just hope you are feeling better...haven't been on pred in a long time, but I do remember those feelings. Take care and I hope you get some rest soon.
Posted 8/26/2011 8:26 PM (GMT 0)
I started on 40mgs when I was diagnosed a couple months ago.... holy hell did it do a number on me... added with all the antibiotics I was on. I went to the ER more than once freaking out because the side effects we're getting to me. Eventually I decided to split the dose, 20 in the morning and 20 midday. As I weaned down I think I finally took it all at once around 20.

Now due to a posssible flare, infection, and my inability to tolerate Imuran I'm back at 30... and taking the full does right after breakfast. I notice it a lot for most of the day. But not as bad as before. I know how it affects me this time so when I feel it coming I go ok Pred lets have fun today!

 

Posted 8/27/2011 1:19 AM (GMT 0)
I can remember starting Predisone at 40mg, and I had the worse case of insomnia and mood swings..I am at 10mg now and have been on Predisone for a few years now....I have gotten to 7.5 and 5 with my symptoms returning..I tried the split dose thing before only to have insomnia and sleep disorders..I take my predisone first thing in the morning.

Cindy
Posted 8/28/2011 3:15 AM (GMT 0)
I too started at 40 mg last year but the dose was split. I remember that I suffered from insomnia, too. I used to take Xanax to sleep. But then I kept tapering it to 20 and 15. When I reached 2.5 mg, I flared up and the dose had to be upped to 15 mg again. Unfortunately, I gained 10 kgs and I'm on a dose 7.5 mg (can't go lower). I've just started oral methotrexate to withdraw pred (but it's not working well, the nausea issue).
Regarding your running to the bathroom, did they check for proctitis? My doc used to tell me that I have indeterminate colitis that hasn't emerged yet. But in a later scope, it was confirmed that I have chronic proctitis (picture and microscopic) Crohn's type. I have been taking Pentasa enema before bedtime and keep your fingers crossed, the crazy urge of having a bowel movement has decreased to 4 or 5 times per day.
Praying for you to feel better soon. Take good care of yourself:)
Posted 8/28/2011 4:54 AM (GMT 0)
question- do you all seem to have a threshold that when you try to ween off the pred your symptoms return?
for me it's 10 mg...i try so hard to get off this crap but get to 10 and BAM- blood's back, more bm's etc.
my doc is so frustrated (i think with me) about the pred but i can't seem to get below 10...
Posted 8/28/2011 4:48 PM (GMT 0)
My threshhold is 10mg..I was on between 7.5 and 5 for awhile and went into a flare..My doctor told me 7.5 is what it takes to keep things running because your adrenals are now asleep..Occasionally, I will have to take a larger dose and taper down to 10mg..The swelling and other symptoms predisone related are better at 7.5 and 5, but not my disease symptoms..What I notice the most is nausea, fatigue, and joint pain when I go under 10 mg..I would like an alternative to the Predisone ups and downs but the doctor thinks this is the most positive therapy for me..It is the cheapest..The doctor is sending me in for a bone density test next month..When I started on Predisone, my threshhold was more like 20mg..

Cindy
Posted 8/28/2011 6:54 PM (GMT 0)
I was at 15 for a couple of weeks before trying Imuran. I felt fine until getting on that drug. So I can't really tell if it was being too low on Pred or if it was all the Imurans fault. But considering instead of just a flare I had a bad infection I'd blame the Imuran.
Posted 8/28/2011 7:52 PM (GMT 0)
Thanks everyone for your insight. Im still in the hospital focusing on my kidneys and awaiting the 3rd surgery for this hospitalization (it'll be surgery #5 in the past 2 1/2 weeks!). Im now on 30mg of pred. My stomach pains are starting to come back, im not sleeping and I have awful swelling my my face and hands. I feel so bloated and gross not to mention in pain from the nephrostomy, blocked ureter, and ureter stent. I see myself falling into a depression. The pain meds are beginning to lose their effect and im feeling as though ill never be discharged. Sigh. Im hoping once I finally do get out I can see a gi and get my flare under control. (I missed my gi apt cuz I was in the hospital).
Posted 8/29/2011 1:45 AM (GMT 0)
Please don't be afraid to ask for help while you are in the hospital and make sure that you are discharged with the right medication. You can ask for a sleeping pill, both for in hospital and at home. It helps a lot with the insomnia from the prednisone. Also if you are on a high dose you might be jittery, snappy and moody, not a good thing while taking care of a baby, you might need a low dose of ativan (or similar). Basically, talk to your nurses or a patient advocate and make sure that ALL of your needs are met not just the ONE that you were admitted for. No one is saying that you will need to be on any of these medications long term (except for maintenance medication for IBD), but in the short term, they can make your life so much more bearable.
✚ New Topic ✚ Reply