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I miss sleeping and many other things

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Crohn's Disease
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Posted 11/8/2010 4:22 AM (GMT 0)
I have diagnosed with Chron's for two weeks now. At the time I am taking predisone. I was on 40 but Friday they dropped me to 30. Which was weird I felt I had more side effects when they dropped the predisone.

The two worst side effects I have had with predisone is:
A) I cannot sleep at all not even naps I might get an hour a day
B) Depression: this black horrible feeling comes over me and I really do not know why. I then get moody or try to isolate myself.

Any advice for either one??? I cannot function like this much longer! It is starting to really take over me. I am soon going to start Remicade but until it is the Predisone and I hate it.

At times I want to quit it but you all convinced me not too.

This weekend has been the hardest and I am just down in the dumbs.

I miss my old life including waking up, going to my job, loving my job, having energy, being healthy and active.


I feel robbed....Though I would be thankfulif I could just get some rest.

Thanks!
Posted 11/8/2010 4:51 AM (GMT 0)
i felt the same when on 50, 45, 40, etc as i tapered, and i seem to remember thinking 40 was worse than 50... but maybe it the length of time on it rather than the dose... I don't know... I am on 25 now and feel better than i did but the side effects come and go still, especially my mood swings... are u on a taper plan? maybe the dr can reduce it a bit more for you? I started tapering while waiting to start humira. the side effects suck, i do understand and hope u get some relief from it soon! u r not alone... hopefully that makes u feel a bit of relief.

best of luck


B
Posted 11/8/2010 6:57 AM (GMT 0)
Hi Teacher3,
I am currently in hospital with some acute CD problems and I know how hard it can be to keep your chin up. The lack of rest has to be the worst. It makes everything else so hard to tolerate. I am awaiting my first Remicade treatment hoping for some relief, so I am right here with you, metaphorically speaking. So hang on. Music, favorite movies, talking with friends or just dozing might help. smurf
Posted 11/8/2010 7:52 AM (GMT 0)
I am in the same boat sort of, just started back on pred, I had insomnia last time I was on it and sometimes I found that if I read in bed it helped or doing a bit of excersise( even a nice walk) helped to tire me out. As for the depression I think most of us have battled it at one pint or another and I would suggest talking to you pcp about anti depressents. Hope you feel better soon <<<hugs>>>> oh p.a sometimes I have found that when I am down if I write myself a letter getting out all that is bugging me it seems to help release some of the tension
Posted 11/8/2010 11:48 AM (GMT 0)
I hated pregnisone so much I tapered it on my own one time. OK not smart but I felt like the side affects were not worth it. I had colon cancer starting besides the Chron's so the steroids just really weren't helping.

I did get relief exercising to wear myself out a little so i could get tired. One round of the stuff I took sleeping pills sometimes. A very small dose prescribe by Dr. because he could see I was going down hill fast that time.

the other suggestions you have received are excellent too.

Hope things work out with the remicade.
Posted 11/8/2010 1:53 PM (GMT 0)
have you talked to your DR about a sleeping aid to use until you get off the pred? 
Posted 11/8/2010 2:23 PM (GMT 0)
I agree speak with your doctor about some kind of sleeping aid. Also be sure you are taking the Pred as early in the day as possible as that will help avoid some of the insomnia issues. Good luck and I hope you get feeling better soon.
Posted 11/8/2010 4:16 PM (GMT 0)
I found prednisone harder the longer I was on it too - but it did get a bit better once I was down to 10 and then 5 (although the insomnia seemed to last almost the whole time). Talk to your doc about how you are feeling!! If s/he doesn't listen, then talk to another one - they should be able to find a way to give you something to ease the side effects. For me, whenever I dropped my dose each week I felt depressed for about two days until my body settled in to the new dose. You will get through this, and it is helping your body even though it is wreaking havoc in other ways!!
Posted 11/8/2010 7:15 PM (GMT 0)
HI

I had most of the same feelings and symptons.

I started on a sleep aid that works fantastic for me. Also, as my CD is in the small bowel I moved from Pred to Entrocort. If you hav small bowel isues you may wish to talk to your doc about switching to Entrocort. The side effects are way less (although it took a week or so for me to get used to it when I first started)

Take care

Dave

Posted 11/8/2010 7:58 PM (GMT 0)
Remeron is my solution. Without it I have horrible depression, anxiety, and panic attacks, plus I just can't fall asleep.
Without Remeron, I need to be on some kind of benzo, like valium every day.
With remeron, I don't need valium.

Exercise helps too, it gives me immediate relief from depression, after 5 mintues on the treadmill, my depression starts to go away.
Posted 11/8/2010 8:19 PM (GMT 0)
I have already forgotten what it's like to have a normal life. After a while this DD becomes a norm and you carry on living taking it a day at a time. I'm sorry you feel bad about it because it's here to stay, however, it's not always that bad. One of my friends has had CD since 1982 and after a successful surgery in 1986 she's been in remission all the time. :-)

Once you're down to 20mg you should start noticing improvements. Try not to worry too much, and I know it's hard to come to terms with the diagnosis, but CD is not a life sentence and you'll soon learn how to live with it. Think about other worse conditions that people have suffered from over the ages (MS, MND) and how lucky we are to have all the knowledge and technology of our times that has made it possible for us to live relatively good lives...

Take care
Posted 11/8/2010 9:45 PM (GMT 0)
been there. It's awful and I will only take pred if my life depended on it. I was on 30 mg a month ago and the mood swings were awful, I was having bad thoughts (not suicidal though) it finally calmed down once I dropped to 20 and so did my insomnia. Hang in there. It will get better! Just Keep Swimming!!
Posted 11/8/2010 11:53 PM (GMT 0)
Thanks everyone for the great advice. I seem to be doing all that. So that gives me confidence that it will get better.

I did call my doctor and talked to the nurse. They are decreasing my pred to 20 tomorrow and then 10 the nexst day (any thoughts if this is too fast) She also said she would call in something to help me sleep. Though, when I went to pick it up the pharmist said it was a medication that wasn't for sleep and I was allready taking it. Oh well I guess I just will call the doc again tomorrow.

I have been doing light workouts again. This helps a lot because I had allways been a gym rat. Exercise is so good for the body. Though, I feel week when I work out.

Staying positive is my motto right now and praying for sleep tonight.

Thanks again!
Posted 11/9/2010 2:49 AM (GMT 0)
That seems like a big drop in one day- my dr is tapering 5 mg a week... so every week I drop 5mg from the dosage and stay at that new dosage for a whole week. Tomorrow I start 20mg, then next Tuesday it will be 15mg (hopefully), etc. You should talk with your drs office about this though, perhaps it is okay to do it for you since you are experiencing those side effects... however it does seem quick to me.

Hope you feel better soon!!

B
Posted 11/9/2010 7:19 AM (GMT 0)
It's pretty safe to drop quite suddenly to 20mg, but you really need to slow down from here as this is the point when your kidneys need to start producing cortisol. What you say doesn't exactly sound like a good doctor's guidance as most of us usually lower the dose in steps of 5mg per week. My GP says the fastest you can do is 5mg every 5 days, but he doesn't recommend it...
Posted 11/9/2010 5:31 PM (GMT 0)
Oh I feel for you! Crohns and the dreaded steroids :( I have had crohns for over 20yrs and recently went on steroids again. For me that would be a drop that would cause more symptoms not less. I know you want off them but some people just can't go that fast and i am one of them..it is more like 20/15 alternating for a week then alternating down another 5mg. If i get sick from going down i will taper with 1mg less each week. There are so many ways to not feel the awful effects so harshly. Listen to your gut, it will definately tell you what is best for you! I wish you the best with all the new things you will learn in the crohns world, so many good treatments are there for us, so we can have a better quality of life :)
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