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Posted 4/27/2018 3:06 PM (GMT -5)
Hey. New to this forum but have been reading and found in very helpful. I was diagnosed with UC 4/5 years ago but have never had any major flares. Some minor bleeding which I have sorted with enemas.

about 5 weeks ago I found myself unwell and ended up in hospital for 2 weeks flaring really badly. I was started on Remicade while in hospital and have had 2 infusions to date. Since been released from hospital I have been tapering Pred and am currently on 30mg.

I run a gym and have have always been very physically active. I train 10+ times a week etc. The Pred has turned my body to mush and it’s demoralising. So my first question is does anybody have similar experiences and did you find you were able to get back to training/playing sport when you got into remission.

My second question is this. The last 2 weeks I have noticed a massive increase in blood and mucus in my BM. I never had massive bleeding, even when I was admitted to hospital. It seems to be worse at night and in the morning before I take my Pred. I asked the GI and she said give it time as the Remicade needs to take effect. Anybody else have similar experiences. Apart from this symptom I am feeling good and stronger with more energy everyday.

Thanks in advance for any response.
Posted 4/27/2018 3:23 PM (GMT -5)
Welcome to the fourm but sorry you've been hospitalized due to a stubborn and severe UC flare.

1.) Prednisone turns muscle (especially from the extremities) into blood sugar, and when that sugar isn't used up, it forms again as fat around the core. Fat will settle around your stomach, on top of your shoulders, and other similar places. While on prednisone, be very careful on power-lifting as we've had members tear ligaments while on it (pred weakens ligaments). Once off of prednisone, you can burn off the fat and rebuild muscles through responsible eating and exercise. In the end, we all tend to have a body that represents our activity levels, things rebalance based on what we eat and what muscles we use. It will take a while and effort but it can be done with persistence. It'll take 3-4 months or so once you're off the dreaded pred.

Increase your potassium and calcium intake while on pred, as pred wastes those two minerals from your body. You already exercise, but light exercise is recommended to limit bone wasting.

2.) It's possible the prednisone is wearing off. You can wait it off. Alternatively, you can ask about split dosages, where you take some pred in the am and some in the pm. Split dosages increase the odds of insomnia though, as an FYI.
Posted 4/27/2018 3:40 PM (GMT -5)
IPoop thanks so much for the reply.

Yeah I have done a lot of reading online and particularly on this forum about Pred and it’s pretty disheartening. You work so hard to build muscle etc and then Within weeks I am watching it waste away. I am back doing light training though and mentally it helps massively. As my whole livelihood revolves around my phsyical fitness it has been a major worry of mine.

I do feel like the Pred definitely helps me through the day but by night I have that feeling of pressure and then more often then not pass blood/mucus. My worry is that if this is happening at 30mg dosage what will happen as I continue to taper. Should the Remicade not be kicking in 3 weeks after my first infusion?

I realise that there are no definitive answers with UC and from reading this forum there are people in much worse condition than me. Positivity is definitly something that these situations need and I will continue to look at the the bright side. Thanks again ipoop
Posted 4/27/2018 3:44 PM (GMT -5)
3-6 weeks for a kick in on remicade, so you should soon be on the cusp of an improvement (about 65% of us get a response from remi). Certainly slower is better than faster on a pred taper; don't rush it.
Posted 4/27/2018 3:51 PM (GMT -5)
Doc has me tapering 5mg every seven days so i’ll see how that goes. Due to go on a stag which I am best man for and have organised in Portugal next week. Still undecided about whether I will be up tobit or not. Funnily enough my best mate who is getting married also suffers from UC but has been in remission on Remicade for last few years. He is providing me with plenty inspiration ☺️
Posted 4/28/2018 8:08 PM (GMT -5)
Eh I 've been off of Prednisone since early March (was in the hospital for two months because of a flare) - I'm still finding it hard to have any sort of energy. I find myself just doing nothing but sleeping in my free time.
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