Okay so I've been on pred for about a week now and ever since I have started it I ahven't been able to sleep well. I lie down and try to sleep and just am so restless. I end up doing so many other things and ahve things race around in my mind. I have also had a few times where my heart was racing and stuff like that. I know that restlessness is a side affect but man this is just annoying. I'm so tired yet won't fall asleep. I'm also on flagyl and levaquin. I'm on 60mg of flagyl right now but stepping down in a few days. I have a doctor's appointment next week sometime so I think if I can't get over this I may ask for some sleep medication or something. I'm just getting sick of all the damn pills I have to take right now at all these different times and stuff. My face is also a little flush and I have a bit of a pinkish hugh going on right now. I have also been having terrible back pain the past few days that won't go away as well. Anyways I just wanted to rant about this a bit and ask how you guys got through this. I haven't been on pred for about five years and I can't remember all of my side effects I went through then. Thanks guys, I may also not be on the computer much for the weekend because my dad is taking my computer on a road trip but I'll try to check in a bit when I can. I have a really busy weekend involvong trying to learn two pretty hard songs on my guitar and I'm packing my room for my next move in the next few months. Aaahh anyways hopefully I will get to sleep now. Good night
Another Pred thread
- Thread starter Jeff D.
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Does anyone know if pred can cause extreme back pain. My back has been hurting so badly that it's hard for me to move at times. Also, today I got so hungry that I almost threw up. I was on my way home from church and I was so hungry I had to stop at Wendy's for a double cheese burger. I thought I was about to pass out. Oh man that was a terrible feeling.
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I had Crohns related arthritis in my knees, and the odd thing is that pred is supposed to help with inflammation (at least my doc at the time called it Crohns related arthritis), it was during the winter for a few weeks and it was horrible, the longer I was off my feet the worse it was once I was on them again. I could get it to almost subside while walking for extended periods of time. The reason I mention it is because for one I know pred is supposed to cause joint issues, so maybe that's really what it was, and the other is I got it while during the highest pred doses I'd been on in the 6 month long regimen, so perhaps it was from the pred, I really don't know, that's all I can speak of in regards to any joint/mobility issues. My knees made me limp and hobble, it was awful trying to "run" for the bathroom.
On the hunger I've gotten like that when not around food for a long while, and while the thought of food was disgusting during the worst of this flare a few months ago, but it was rare because I've had a habbit of eating every couple hours even before Crohns, but yeah the "passing out" feeling sucked.
On the hunger I've gotten like that when not around food for a long while, and while the thought of food was disgusting during the worst of this flare a few months ago, but it was rare because I've had a habbit of eating every couple hours even before Crohns, but yeah the "passing out" feeling sucked.
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I hope it goes away as I lesson the dosage. I'm on 60mg right now and tomorrow go down to 50mg. It's like if I am not moving at the moment my back kills but if I lie down or sit down all of a sudden it's a lot of pain. I also have a knot in my left shoulder, where most of the pain is, that won't go away it's about two inches thick and about four inches across. It just protrudes from my back.
I think when I go out of my house I will need to pack some cookies or something to hold me over till I get home. I hate that feeling.
I think when I go out of my house I will need to pack some cookies or something to hold me over till I get home. I hate that feeling.
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Hey Jeff- Sorry to hear you are stuck on the pred cycle again. I am down to 10mg just today after being on since Jan (was on 50 mg for 3 months or so)...
And I can tell you for certain, back and knees (like Benson) can hurt due to the Pred so my GI said. I have mornings (although becoming much less frequent - were the worst at 30mg) when I couldn't walk at all. My back was ferocious for about 2 weeks too at 30mg...stabbing pains and huge knots too. My trick for those was a hot water bottle and not moving as any movement would jar me to tears.
But it did stop and I haven't (knock on wood) had any back issues since I lowered to 25 and continued on with the taper. The knees only go about 1-2 times a week and I now force myslef to do laps in my house to *work it out* - can take a few hours but the swelling goes down and then the pain. Worse case - endocet works too.
good luck and I hope you feel better soon~!
And I can tell you for certain, back and knees (like Benson) can hurt due to the Pred so my GI said. I have mornings (although becoming much less frequent - were the worst at 30mg) when I couldn't walk at all. My back was ferocious for about 2 weeks too at 30mg...stabbing pains and huge knots too. My trick for those was a hot water bottle and not moving as any movement would jar me to tears.
But it did stop and I haven't (knock on wood) had any back issues since I lowered to 25 and continued on with the taper. The knees only go about 1-2 times a week and I now force myslef to do laps in my house to *work it out* - can take a few hours but the swelling goes down and then the pain. Worse case - endocet works too.
good luck and I hope you feel better soon~!
K
karl
Guest
i've been on a 40mg pred taper for a couple of weeks now. i'm currently at 30mg, tomorrow i drop to 20mg.
the first week was hell. i was hungry, but my strictures were still flared. i would eat a bunch more than usual, and then feel it for hours. it felt like a snake was in my gut moving around for hours.
also, i got odd sharp pains in weird places, like my jaw would get a sharp pain for a few seconds. i got this a couple of times in my chest, my butt cheeks, right arm, back of my skull. it was odd, but only happened a few times.
i got insomnia pretty back, along with restless legs. i found that stretching would help out somewhat. sometimes i would only get about 2 hours of sleep, find a good book to read on those nights.
i get back pain sometimes, it's not severe, but it is annoying. mostly upper back pain, right on the spine. tylenol helps.
one thing i have to ask my GI about is my odd kidney feeling. for the first week, i would be sitting/standing there and i would feel that my kidneys were slightly sore. it would only last a few minutes. i'm guessing it was my adrenal glands going dormant from the pred.
other pred side effects included facial flushing, breaking out on my chest a little, it messed with my sense of smell on the first day.
good thing is that nearly all of the side effects have gone away after the first week and a half or so.
the first week was hell. i was hungry, but my strictures were still flared. i would eat a bunch more than usual, and then feel it for hours. it felt like a snake was in my gut moving around for hours.
also, i got odd sharp pains in weird places, like my jaw would get a sharp pain for a few seconds. i got this a couple of times in my chest, my butt cheeks, right arm, back of my skull. it was odd, but only happened a few times.
i got insomnia pretty back, along with restless legs. i found that stretching would help out somewhat. sometimes i would only get about 2 hours of sleep, find a good book to read on those nights.
i get back pain sometimes, it's not severe, but it is annoying. mostly upper back pain, right on the spine. tylenol helps.
one thing i have to ask my GI about is my odd kidney feeling. for the first week, i would be sitting/standing there and i would feel that my kidneys were slightly sore. it would only last a few minutes. i'm guessing it was my adrenal glands going dormant from the pred.
other pred side effects included facial flushing, breaking out on my chest a little, it messed with my sense of smell on the first day.
good thing is that nearly all of the side effects have gone away after the first week and a half or so.
Thanks guys. Hopefully that means I will slowly start getting better. My mom is making fun of me saying I always have to have something to complain about.lol
I can still walk and do things but man at nights and in the morning and some other random times during the day it feels like I can't do much. Today I'm going to be sleeping on one of those memory foam pads and hopefully that helps. It's like my back is oversensitive to any movement.
Also, I have been getting these morning rash type of things. I feel like I have things crawling all over me at all times until I take a shower and then it normally gets a little better. We'll see today I go down 10mg so hopefully I start feeling a little better.
Thanks again guys
I can still walk and do things but man at nights and in the morning and some other random times during the day it feels like I can't do much. Today I'm going to be sleeping on one of those memory foam pads and hopefully that helps. It's like my back is oversensitive to any movement.
Also, I have been getting these morning rash type of things. I feel like I have things crawling all over me at all times until I take a shower and then it normally gets a little better. We'll see today I go down 10mg so hopefully I start feeling a little better.
Thanks again guys
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When they first put me on prednisone about 60mg my back would start hurting real bad, weird pulsing pain. Though after I got up for a while it stopped. Might try walking for about 30 minutes see if that helps.
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I totally had the intense hunger pains when I was on pred. I would wake up at 4-5 am (usually only 30-40 minutes after I fell asleep due to massive insomnia as well) and HAVE to eat because my entire body ached. If I forgot to bring a granola bar or some other snack to eat on the way home from campus, I'd be in pain for the next 20-30 minutes easily.
I never go severe back pains, but I would get horrible muscle cramps all over my legs at random times during the day and night. This included cramps in my feet, ankles, calves, hamstrings, quads, and also my fingers and forearms. Once I was on the pred for 2-3 weeks the insomnia started to fade a bit and the hunger/hunger pains decreased once I started to taper after about a month, so the side effects fade...they just take time.
I never go severe back pains, but I would get horrible muscle cramps all over my legs at random times during the day and night. This included cramps in my feet, ankles, calves, hamstrings, quads, and also my fingers and forearms. Once I was on the pred for 2-3 weeks the insomnia started to fade a bit and the hunger/hunger pains decreased once I started to taper after about a month, so the side effects fade...they just take time.
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not trying to be mister negative, but get checked for early onset rhumatoid arthritus. and also sacroilliac arthritus.
its an offshoot of this fun disease, and pred makes it worse by damaging your bones:*(
i had a bone density scan not long ago, and i found out thru the pred i have the bones of a healthy 80 year old
its an offshoot of this fun disease, and pred makes it worse by damaging your bones:*(
i had a bone density scan not long ago, and i found out thru the pred i have the bones of a healthy 80 year old
Thanks for all of the suggestions.
jed I don't think I have any type of arthritus as I just developed these symptoms over the last week and the problem is more in the muscles then with the joints. My bones are really healthy, they are strong yet flexible. I have never broken a bone, but I did bend one which was the first time my doctor had ever seen that. So I think I'm having more muscular problems than joint problems. I think tomorrow I will do a light workout with some wall presses and pushups. Hopefully using the muscles will make my problems go away.
Thanks for the suggestions.
jed I don't think I have any type of arthritus as I just developed these symptoms over the last week and the problem is more in the muscles then with the joints. My bones are really healthy, they are strong yet flexible. I have never broken a bone, but I did bend one which was the first time my doctor had ever seen that. So I think I'm having more muscular problems than joint problems. I think tomorrow I will do a light workout with some wall presses and pushups. Hopefully using the muscles will make my problems go away.
Thanks for the suggestions.
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Make sure to be taking a high dose of calcium when on pred. I was told to take 1200-1500mg of calcium a day.
I'm drinking a ton of milk right now as I'm not really lactose intolerant.
My back started to feel better and last night I didn't sleep at all. I finally got to sleep at 7:30 this morning and woke up at 11. Good news is that I'm going on sleeping meds for the next few days or until I can get less side affects from pred. I was also told that I should taper quicker than orginally planned. They told me to go from 60mg of pred down to 50mg but today he said I should just go down to 40 and as long as I have a little pred in me by mey next remicade cycle I should be fine. I'm going to be getting remicade within the next week or two as I will finally have insurance starting on monday next week. I'm so happy I'm finally getting better. I just need to get some sleep.
My back started to feel better and last night I didn't sleep at all. I finally got to sleep at 7:30 this morning and woke up at 11. Good news is that I'm going on sleeping meds for the next few days or until I can get less side affects from pred. I was also told that I should taper quicker than orginally planned. They told me to go from 60mg of pred down to 50mg but today he said I should just go down to 40 and as long as I have a little pred in me by mey next remicade cycle I should be fine. I'm going to be getting remicade within the next week or two as I will finally have insurance starting on monday next week. I'm so happy I'm finally getting better. I just need to get some sleep.
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Yeah Jeff, good news I guess. Pred isn't usually a culprit in withdrawal symptoms in doses higher than around 20-30 mg, so any tapers above that usually aren't as harsh as tapers sub-20mg or so. I have the opposite though, I can't seem to get enough sleep, tried just 8 hours, tried 14, always tired.
Oh man that's terrible. Sleep is really important for us so that we can heal but too much can be just as detrimental as not enough. Try to go about 6 hours of sleep a night for a few days and see if there is any affect. In school I was learning about how between 6 and 8 hours of rest there is a sweet spot for everyone and if you can sleep that amount then your body will feel more rested. I can't wait for tomorrow when I'm down to 40m of pred.
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I miss my 40mg a day. The 20 doesn't give me the same "feel good" feelings and energy I had at 40. The doctors told me though I have to find my own personal balance between side effects, risk and amount of "feel good."
Hope you feel better soon and get some sleep!
Hope you feel better soon and get some sleep!
Thanks. I'm having such a problem right now with getting my prescription though. My insurance doesn't want to pay for my lunestra to help me sleep they want me to take something else but my GI hasn't approved of it so I guess I will be having sleepless nights till all of that gets settled. Good thing is I have been getting a lot of research done the past few nights.
