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Prednisone-week 2, 40 mg. - up 5 pounds aready!

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Ulcerative Colitis
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Posted 3/31/2016 1:38 PM (GMT 0)
So, long story short, am in a UC flare, had a VERY BAD reaction to LIALDA (was on it for last flare which was a couple years ago but this recent one for some reason wrecked my body). Was on it about 1 month and then my hemoglobin count started dipping down to 6.9 and had to go into the hospital. To sum it up, they ran all kinds of blood tests, did an abdomen scan, blood transfusion, had a bone marrow biopsy test and all they can come up with is that the LIALDA was killing off my red blood cells and couldn't figure out why especially since it didn't effect me in my last flare. WEIRD I KNOW! There is nothing in the medical books either about reactions like this...maybe I will be famous one day! HA HA Of course, they stopped it when I was in the hospital. Now, of course, am much better than a month ago. GI had me just skate a couple weeks without ANY meds after getting out of the hospital to give my body a break. He has me on Prednisone now, week 2 of 40 mg. and all of a sudden just THIS week, am up 5 pounds. R U KIDDING ME!? I am NOT eating a ton of food to warrant this weight gain either.

I know there are side effects (more than what I listed) of water retention, swelling, bloating in the abdomen area (got all these) and just wonder how I can stop this. I have ENOUGH trouble losing weight to begin with and to see the scale creeping up and not able to stop it is so discouraging and makes you mad. I do know that when you are being weaned off of this "Necessary Evil" you do EVENTUALLY lose some. I meet with the GI tomorrow and will tell him how I am feeling. I hate this feeling and it is happening so quick and cannot stop it of course. Just really sucks. I don't eat a lot of salt and try to watch what I eat anyway now my appetite is back. Just recently able to start driving myself to work and walking so guess start walking a bit now on the treadmill on a regular basis to help? No way I will burn off 3500 calories which equal a pound right now but is there ANY way I can control this weight gain? Water pills maybe? What works for you? Just getting off Prednisone? HELP, am miserable! mad

Post Edited (Taben) : 3/31/2016 8:06:12 AM (GMT-6)

Posted 3/31/2016 1:43 PM (GMT 0)
It doesn't sound like a Lialda reaction at all. It sounds like Lialda wasn't strong enough for your worsening flare and that's why your blood count went down and you needed prednisone.

Anyway, not what you asked haha but yeah, it's just water retention so it will come off when you taper. I put on 40 lbs in two days and that came off when I went down to 35 mg. i couldn't physically do anything myself due to all the added weight.
Posted 4/18/2016 5:52 AM (GMT 0)
Thanks Bacon Girl!👍 Still feel very spongy, bloated, sausage-like. LOL. Now, doctor tapered me down to 20mg for 4 weeks then 10 and so on. Be glad to get off this necessary evil. Yes, am feeling better so it is working but so miserable because of the bloated belly and feel like my skin is spongy. Do drink a lot of water and watch the sodium intake, try to eat healthy like I was before my flare. I hop this bloat, guess weight gain, goes away after I get to 10mg or lower. Hate this feeling and the way my abdomen area looks.....like I have a small beer belly and I hate beer. LOL. 😂
Posted 4/18/2016 12:53 PM (GMT 0)
Glad you're feeling better. We all have a love-hate relationship with prednisone. Some of the bloating and weight gain is water weight and that comes off fairly quickly. Some of it is weight gain due to the insatiable appetite pred gives us and that doesn't shed fast at all. Good luck!
Posted 4/18/2016 2:29 PM (GMT 0)
People say eating less salt can help. I always had so much weight gain on prednisone, initially from the water retention, but later in the course, it was appetite. I was hungry ALL the time. Once I ended up on it longer than I wanted, I was on low doses, trying to get off without symptoms arising, and that was when I had the worst weight gain. I was carrying about 25 pounds on my normal weight. It was hard for me to look in the mirror... When I finally got off, the weight didn't drop off like I hoped. I had to work out and minimize eating and I still carried an extra 10 pounds on my normal weight the rest of the time I had UC (barring times I was in major flares and I lost a lot - but it always came back). Try to keep the course short and don't give in to increased appetite when it comes about and you will be okay. smilewinkgrin
Posted 4/21/2016 3:48 PM (GMT 0)
notsosicklygirl---Well, cannot do anything about how long I am on the Prednisone. Depends on the doctor. I am thinking about calling today to see if there is ANYTHING that can be done for this HUGE and I mean HUGE belly. I am so miserable with this bloated feeling all the time. Probably nothing and I will have to just DEAL with it till at least June. GRR!
Posted 4/21/2016 4:54 PM (GMT 0)
Cut out salt, and drink plenty of water, and ask about a mild diuretic. All helped me fight bloat on Pred.
Posted 4/26/2016 4:49 PM (GMT 0)
This may sound insane, but I've been on 40 mg for 4 weeks and am just now starting to taper off. I'm so hungry all the time! I could eat and eat and eat.. But, that isn't helpful to my digestive system because obviously that puts a lot of stress and work on my system that is trying to heal. Anyway!! I've been trying to eat a few snacks every hour or two that help me feel full and satisfy that need to taste something. I usually dip a spoon in honey a few times a day and that always helps! Plus, honey is naturally a great healer. I will also put a banana in the fridge and eat it either in bites throughout the day or whole as a snack. I'm not sure what it is about the cold banana, but it always works better for me when it's cold.

And.. I know this last one sounds gross. But, I swear by it! Whenever I'm feeling okay.. Not in the middle of going to the bathroom or cramping.. I take two tbsp of Apple cider vinegar and then drink at least 16 oz of water. It makes me feel so full! I take it for many reasons, but helping curb that hunger is a huge benefit!
Posted 4/27/2016 2:43 PM (GMT 0)
Imadcock42, Prednisone gives, I think everyone an appetite.
And for me, it enhances flavors. Everything is crazy delicious when I'm on Prednisone.

My doctor had me stick to low residue foods.
Low insoluble fiber, to let things heal.

I snacked on salted white rice with a touch of olive oil. And it was prednisone delicious!
(Not so good now.)

(Oh, and don't worry when all you want to do is sleep when you taper. It's OK. Your body needs sleep, too. It's not depression. It's normal.)
Posted 4/27/2016 2:54 PM (GMT 0)
What works for me is to eat half.

This sounds so mock-ably simplistic.

I eat what I would normally eat, just exactly half.
No snacks. No dessert. No beverages with calories.

When I go to a restaurant, I either get someone to split with me. Or I ask the staff to give me half now, half to-go. I keep an ice chest in the trunk. I ask for a glass of ice to put in with it. Otherwise I rationalize it not going to waste and eat it all.

Until my clothes fit again, no cheating!

If someone brings me donuts or whatever, I carefully wrap and freeze it. Not allowed even half till clothes fit.
Posted 4/27/2016 3:31 PM (GMT 0)
I had success with not gaining too much weight by going extremely low carb while on pred. Dull, not nutritionally sound, but effective and only a temporary diet.
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