Prednisone Misery!

Ok, so I am technically feeling muh better! I am on 40mg of prednisone and have literally gained almost 15 pounds in the last 2 weeks (much needed weight gain though) and am back to my normal weight. I am still on this TPN though. Do you think this is necessary? I am at 125 pounds, so TPN seems excessive. Or do you think this weight is "artificial", like not do contributing much to my nutrition? All I crave is sugar! I am getting almost no sleep at night and my skin is breaking out . I will be down to 35mg in a few days - my surgeon is tapering me much faster than Usual because she doesn't want me on it for surgery. I am also guessing I will start to feel like crap again once the pred is below 20mg - but I guess the goal is to reduce inflammation as quickly as possible so we ca do the surgery. Do you think my weight wl drop down again once the pred is lower? Sometimes I wonder if Im Taking 1 step coward 2 steps back. Right now I'm just enjoying being able to eat real food for a few more days - and catching up on reading all night while my family sleeps, sigh.

I have been on prednisiolone for the last 2 weeks..started at 30 and tapering 10   a week.  

I have gained 20 lbs in this time frame. I am at 115- more or less what I used to be when I was well.

I am loving being able to eat real food for a change, having more energy.

The down sides are the weight gain and the non sleep.

I have been told the weight will go pretty quickly when the prednisone is over.  So a burst of normalcy in so

many ways for a few weeks.  Hoping n some way there is a miracle that it fixed my gut.

I get so tired of being sick and tired.

Hugs to you and hope surgery goes well

 

No, the surgeon wants me on no steroids before or after surgery - - It has been recommended to be off both by her team and the team at the Cleveland Clinic as it impedes healing and can make the intestines difficult to resect together during surgery.

The surgery will most likely take place in about 5-6 weeks, but this is dependent on my nutrition levels, since right now they are too low for elective surgery. However, if I end up in the hospital one more time we may just have to go for it more emergently. I am taking a long acting pain reliever and TPN in the hopes that I can hold out for 6 weeks at home and get my energy up without being hospitalized. So far so good, but this prednisone is killing me. I think I got about 5 hours of sleep last night, and really I think that's only because the pain reliever makes me a little drowsy. If I didn't have that I don't think I could sleep at all. I hate hate hate sleeping pills or antianxiety meds, they make me feel awful for like 24 hours afterwards, so I don't think that is an option for me. Plus, I really don't feel like adding MORE powerful medications to my list - I am already walking around like a zombie half the day, Good thing I'm on temporary medical leave from work, I would be useless!

I just have to keep thinking about the future and hope this surgery is my answer. I will be so happy once it's over and I am weaned off all medications (besides a maintenance Crohn's med).

NCOT - are you still on prednisone? How was your taper? I can't tell how much the taper is affecting me because I have strictures that are from scar tissue and still causing pain even on the prednisone. It has helped with this one area of inflammation which I feel is getting a little sore again as I taper down.

Thanks for commiserating folks, this has been a tough summer! Already looking forward to next summer!!

I was told I would need to be on steroids for the surgery. My IBD nurse suggested tapering down, but the surgeon was basically 'don't bother'. I know full well steroids impede healing, but because I had been on steroids for a long time before surgery, there was no way my body was going to make enough of the stress hormone, cortisol, to cover my ass during surgery.

So I'm not sure how you're gonna get through it without any additional steroids.

No, been off Pred for a few months, thank god. The taper itself was okay, as I was basically Crohn's-free after surgery, so there were no Crohn's symptoms to re-emerge. It was after I came off Pred that I felt like living death for a while: fatigue so bad I could hardly walk, the worst insomnia I'd had in years, and the worst depression in years too. I even considered going back on a low dose of Pred - truly an act of desperation - but I decided to ride it out and I'm still riding it out, although things are better than they were.

Edit: I also developed weirdly sensitised skin, which was quite horrible when it was bad, but I suspect that was more related to Oxycodone than to Pred. Touch wood that's 99% gone now.

Post Edited (NiceCupOfTea) : 8/10/2013 1:51:08 PM (GMT-6)

17 months :-/

Not continuously; I did try to taper off a few times but each time I got off it I would relapse shortly afterwards and end up back in hospital for iv steroids followed by yet more Pred.

But still, it doesn't take long for adrenal supression to kick in - as little as 2 weeks on a high dose of Pred. But perhaps a month is a short enough period of time to still taper off Pred and not need any steroids for the surgery. I'm still a tad surprised, though, considering what a major trauma surgery is for the body.

Have to say, I had no trouble getting hold of Pred. Been on what feels like half a million courses of the stuff over the years; count myself lucky to have not got any worse side-effects than I did. But in retrospect, Pred was an utter waste of time. Yeah, I always responded to it, but the pathology report of my colon and terminal ileum after surgery showed severe active inflammation and ulceration, with not a single centimetre free of disease. Pred is the ultimate masker of symptoms, but it does nothing to heal. If doctors are really moving away from the use of Pred in Crohn's, that is only a good thing in my opinion.

Anyhow, good luck with your upcoming surgery. I'm sure it will help; as much as I don't really like having a stoma, the surgery has at least got rid of the blasted disease, which is more than any med did.

I'd have been a lot happier if I could have avoided a stoma. It's liveable with and there are worse things to have, but I still would far, rar rather have been able to avoid one or at least just have a temporary one.

So yeah, even though I have no symptoms anymore, I still feel like I kinda lost something. My colon >_>. But something a bit more besides.

I have been on a maintenance of 10mg for awhile..with my last illness..The doctor looked at me and said you need to up it 50mg for at least 5 days..I did not last five days..I forgot what that high of a dose does..20mg was bad enough..I got back to 10mg today..I am bloated and gained 10 pounds..

Cindy - I am very bloated as well, probably from the sugar and salt I'm craving. Today I started the SCD diet and had NO sugar and feel less bloated already. I am going down to 30mg tomorrow and hope I can SLEEP better! I swear the only reason I am getting any sleep at all right now is because I am taking pain medication that makes me drowsy. How is your sleep? Any plans to get off the pred completely?

Thanks Habs! I am not going to lie - I go back and forth with the SCD diet right now. I feel pressure to take control over my diet and then also just gain weight. Today I was dehydrated and the home nurse told me to drink Gatorade - not SCD legal, but it was that or go to the hospital for IV fluids, so I had some Gatorade. I am getti IV fluids through my picc for the next couple of days and really haven't eaten at all today. It's overwhelming just waiting for surgery and I feel helpless.

I know diet change is something I want to do following survry, and right now I'm just going to try and listen to my body. My surgeon told me not to worry about food and let the TPN nourish me. She does not think I will make it completely off pred for surgery, but We are trying. Going down to 35mg tomorrow!