Weighing my option of being hospitalized.

very depressed........pred. has cause me to gain 21 unwanted pounds since May 17.....outta control hungry all the time. I want to stop pred. right now but GI said taper down until second week in July.

Ditto what Susie said. It works well for some people for inflammation but nobody escapes the side effects. Try not to focus on the weight since being on prednisone is out of your control. IBD is totally unpredictable and being on prednisone just happens sometimes but it is not your fault you have gained weight. I also am still on prednisone and my calorie intake has gone up in the form of salty, crunchy foods. I never really needed that stuff before but now I have to eat it daily. I realize that this phase will pass once I am off of it and to not beat myself up about it. I had a similar convo with my doctor about my high glucose levels right now and she said not to stress about it. She said to focus on what I can eat for my UC and the prednisone side effects would go away once I was off. It really causes so many things to go crazy in the body but just try to focus on anything positive in your life right now. It is hard to do when you are sick but at least you have us to talk to! I hope things get better for you soon, Wayne.

Once you get down to 10 mg, hopefully the hunger will start to dissipate. Try to get some exercise if you can. Weight-bearing exercise (like walking, running, lifting weights, hiking---always carry t.p., lol) is especially important for us when we are on steroids to try to help combat bone density loss that steroids often cause. Also make sure you're getting plenty of calcium and vitamin d while on pred.

Wayne,

I must be an oddball. After taking Prednisone I was still eating anything that didn't move 3 months later. It was hard to stop.... And that hungry feeling didn't go away for about 3 months. I ate a lot of cooked carrots...cooked celery....cans of green beans....egg whites omelets with veges in them... cooked cooked and cooked with nothing extra in them. I was so tired of skinless boneless chicken breasts and canned veges with nothing in them I wanted to cry. I ended up sprinkling everything with Mrs. Dash...

It was almost as bad as when I was on the Devil's Tic Tics🥵🥵🥵 ... Except I had no energy.👿👿👿 The only thing that saved me was venting on here and everyone walking me thru it.

Sorta like I'm doing now... Lol...

The help you need now will outweigh (pun intended) the negative. The weight will come off. Try not to worry about it too much, focus on the positive, increase your fluid intake to try to wash some of it out, try low residue diet with canned fruits and veges... But without adding all the extra stuff in--if you can do it. If not... Don't worry. I always think my body is craving that stuff for a reason.

Hang in there. You can do this,

Clo

Post Edited (clo2014) : 6/15/2023 10:12:11 PM (GMT-8)

My ideal weight for my height (6-1) is around 200.......the day before I started infusion and pred.(May 17) I weighed 204......this morning I am 225 and the runs have returned too. 21 pounds in a month! I was up 3 times last night going to the toilet. I still have 3 weeks left of pred. to go plus my 3rd infusion is on the 28th. I'm trying to avoid anything obvious as a weight gainer. It has been depressing mentally and physically to date not seeing much progress happening, but I am encouraged to hear from many that it will come off at some point after pred. stops. If it doesn't I'll be buying a new wardrobe by August. Appreciate the support....it helps a lot!

I had to buy a new wardrobe. It sucked. Pred can also cause depression and anxiety and mood swings so be aware of that as well. I know it did for me. Sorry you still aren't feeling great.

Wayne, I definitely have had a wide range of sizes in my closet due to flaring. It was actually so annoying but I decided to donate all of my small clothes to a family in February since I had been in remission for so long. I figured they were just taking up space. Diarrhea started at the end of the same month. I could not believe that bad luck since I had kept those clothes for at least 10 years.

Definitely keep your old clothes if you do need to buy new ones. Weight fluctuations are so common for us.

Wayne,
I have dresser drawers with my various sizes when using Prednisone..They go from a size 6 to a size 18....and Prednisone makes me circle thru them. Flares make me circle back the other way. So don't throw anything out. It's driving my spouse crazy... All the different sizes and the refusal to toss the ones that don't fit.... But I'm not gonna do that anymore. I'm keeping them and recycling to the correct size needed. Ive tossed the smaller ones and then needed them because of a flare--who wants to shop when you are going thru a flare,??

I will say that I was on 80 mg of Prednisone for a very long time. I finally have tapered off but I gained 70 pounds or so while on it..... And I've been off of it for quite awhile. My PCP is looking at Wegovy as a weight lost help/possibility... Just until I lose the weight.... So I get how frustrating it is to have to take a med and watch the scale climb up. The weight before would go away after about 6 months... But that hasn't happened this time. Sigh... I should have eaten more veges and fewer noodles....

And your right. This group of people are always there for one another. We vent, joke and help one another as much as we can. Frequently the people in here are some of the few people who really understand this IBD journey we are all on.

Hang in there.
Clo

P. S. Sweats or stretchy shorts/shirts are wonderful for those times when you are at home and don't want to mess with clothing issues.

Also... My GI has suggested I keep on ten pounds or so for the next flare.... Just a thought.

I don’t think you will get normal stools on the pred as you have dropped to such a low dose. Usually high dose 40MG plus should be hitting it. Hopefully your infusions are the things that turns you. I wasn’t responding to IV or steroids in hospital 4 weeks ago, but the moment i went on Xeljanz, i have managed to get into remission in 3.5 weeks and now currently i have zero UC symptoms. Going full solid stools now. I am tapering on the Pred too

Xeljanz is a J - inhibitor medication tablet form. Can combat flares and also acts as a maintenance drug to stay in remission long term similar to biologics ( infusions) etc. It has finally got me out of a horrendous flare. Hopefully your infusions do too.

I know you’re anxious to get off prednisone but if the urgency continues for the next couple days, I’d slow that taper down and kick back up another 5 mg. Until your infusion and the try dropping again.

Also, after this next infusion you will go 8 weeks until the next. Don’t be too discouraged if you experience a few symptoms around the 6 week mark. Your body is still building up that infusion medication. By the 5th infusion (your 2nd 8-week dose) you should be in remission and if not then it’s time to start thinking about another medication. This disease requires patience and an arsenal of drugs.

Have you ever tried budenoside? You might ask about switching to it if you still need a steroid after you finish your prednisone taper. It works for some people with mild inflammation. Also if you don’t have any rectal medications (enemas, foam, or suppositories) this is a good time to ask about them and give them a try. They really work on lingering inflammation.

Good luck! We feel your pain and frustration. This disease sucks and most of us suffer in silence because talking about all the gory details is just too gross — except in here! We all know those details firsthand.