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Ulcerative Colitis
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Posted 1/23/2013 11:58 PM (GMT 0)
For those who read/remember my previous posts, I started flaring very badly around the end of November. For 6 or 7 weeks I had NO appetite so I was not eating much, and didn't sleep more than 2 hours at a time because I had to get up and go so often. In this time I also lost 30 or so pounds, and I was probably slightly underweight to start with. Needless to say 110 pounds on a girl who is slightly over 5'9" is NOT good.

So....advance to now. I have been on pred for about 5 and a half weeks. It did not help me at all, but the doc has me sticking with it just in case it is keeping me from getting worse. One week ago yesterday I had my first Remicade infusion. While far from healed, I have been feeling much better than I have in a long time. I'm able to eat more, but still not very hungry, I can sleep through the night....well 4 or 5 hours at least (I think the pred is messing with my ability to sleep much) and most days I feel OK ish....relative to how I have felt. I still have 5-8 bm's a day, ranging from D to semi-formed, some urgency and slight cramping, no blood, no more nausea.

One problem....in the week since my infusion I seem to have gained 10 pounds back?!?!?! I am not eating enough to justify such a huge weight gain and am worried it will continue like this and soon surpass what I lost. Has anyone had an experience like this coming out of a flare? Could this be from my body being in starvation mode and is now completely out of whack and hoarding anything I eat?? Could it be the pred?? How do I keep it under control??
Posted 1/24/2013 12:11 AM (GMT 0)
Oh yes I had that experience coming out of a flare. The weight that dropped off (7 pounds in one week for example) during the worst of the flare, came back just as quickly once it was over. It will probably keep glomming on like that until you are back to the weight you were at before, or somewhere near it. Being on pred, from what I understand, you do run the risk of continuing to gain beyond what you have lost (but not, I will bet, at the same rate of 10 pounds per week). To fight against that, you would do the "usual" weight control things.
Posted 1/24/2013 2:18 AM (GMT 0)
It is probably from the pred.
Posted 1/24/2013 3:56 AM (GMT 0)
I gained too, and figured I was just giving my calories more time in my body, instead of food moving through so quick. But I really don't know.
Posted 1/24/2013 4:05 AM (GMT 0)
Thanks for the responses! I have no problem gaining back the weight I lost, but really don't want to gain more than that. And either way, 10 pounds in one week just isn't right....I know I have NOT eaten enough to justify that, so I don't understand and really worry about how much more is to come....especially if it is because of the pred. :(

Is there a way to tell if it is just water weight?? Are there any tricks to slowing the gain if it IS because of pred?? I just want off that darn drug for SO many reasons!
Posted 1/24/2013 1:32 PM (GMT 0)
Pred will do that to you - weight gain for no apparent reason. I took a very short course recently and gained 4 pounds in just a couple days. Hadn't even eaten 4 pounds of food. Some of the weight gain is water retention. Try limiting daily salt intake to as close to zero as possible (you don't have to be obsessed about it). Pred will make you hungry though so every time you feel like you have to eat, ask yourself if you really need to or if it is the pred talking to you.
Posted 1/24/2013 2:01 PM (GMT 0)
Oh boy....I guess it might just get worse then. I've been on the pred over 5 weeks now and don't ever really feel hungry. Not until the Remicade infusion did I even feel well enough to eat more than I could force feed myself...this flare killed my stomach and my appetite. That's why the weight gain shocked me, I'm not eating much. I will definitely watch my salt intake, be careful about what I eat in general and look into some natural diuretics (sp?) I also want to ease my way back into exercising.....and most importantly do all I can to recover from this awful flare and get into remission!!!
Posted 1/25/2013 2:26 AM (GMT 0)
Well, I wrote my GI yet again about my concerns over the pred. Aside from the very sudden weight gain, I have had blurry vision, heart rhythm issues, trouble sleeping and starting to have minor aches and pains. He finally agrees that the side effects are starting to outweigh any benefit I might be getting and I can start tapering tomorrow!! Hopefully we are right in that the pred isn't helping me so that I won't get sicker again, also hoping for a trouble free taper that starts to ease these other issues fast!!
Posted 1/25/2013 3:45 AM (GMT 0)
Pred isnt helping your UC but the side effects are still there, they just came into effect once the Remi helped, which I am glad it did as its helping me too :).
Posted 1/26/2013 2:58 AM (GMT 0)
As a long term Pred user I can tell you it totally whacks out your body! For months I maintained around my usual weight,then when I started to taper I blew up! At 5'10, I am use to weighing between 125-130 pounds. I am at less than 2mgs of Pred and have hit the 140 mark. I don't eat much at all! I avoid salt and drink lots of water. My joints ache and my vision has gone to crap. I am praying that when I am totally off the Pred, all this will go away.
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