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Newly Diagnosed, on Pred, is it working?

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Ulcerative Colitis
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Posted 8/10/2014 7:17 AM (GMT 0)
Hi there, its the first time ive ever reached out to anyone on a forum board before but after reading through some of the posts here and seeing the level of trust and support between members is highly encouraging.

So, my story. 6 weeks ago i started having loose BM's with no increase in frequency and mild amounts of blood on paper only. This quickly progressed into a full blown flare with 15-20 VERY bloody BMs a day which were all diarrhoea. A stool sample flagged up E.Coli (False positive and a massive red herring which delayed my diagnosis). Ive never had any sort of cramp or pain or fever however i lost 8kg in Body weight (18lbs) in 5 weeks.

6 days ago i had a flexi sigmoidoscopy revealing "moderate ulcerative colitis" and i was immediately started on prednisolone (40mg/day for 2/52 then taper by 5mg every week thereafter) and Asacol (mesalazine) 3200mg daily as a maintenence dose. I IMMEDIATELY felt the effects of prednisolone- 20BMs a day to 2 a day, increased appetite, increased energy and mental state( was depressed prior to Dx). But, Im still finding the BMs are not formed(possibly 1 step better on the bristol stool scale) with some degree of blood but nowhere near as bad as before. Blood is on paper only and not leaving my toilet looking like ive filled it with red wine.

I still have urgency when the prednisolone wears off at about 7am. Im worried that although there has been significant improvement, there has been no improvement since the first day of taking Pred. Should the blood have stopped by now and stool be more formed? The fact that I still have urgency in the morning mean that as I start to taper off the Pred I will go backwards? I assumed that the length of time on Pred was just to wean off of it safely without adrenal problems and not that it will take 2 months to work. I have another 8 days of 40mg/day, will i notice further improvement in these days?

Am I worried for no reason or is it valid?

Thank you for any input , I'm just very anxious and have had anxiety problems in the past.
Posted 8/10/2014 11:48 AM (GMT 0)
Welcome to the forum, and sorry you had to join the UC club!

It's natural to be worried, but I don't think you should panic yet. You've only just started the pred, and while it does take effect instantly, for some people it takes a couple of days before they're properly well again. And especially because your symptoms were pretty bad prior to starting, so these things take time to calm down. Don't worry, you're not going to start deteriorating as soon as you taper; for most people that happens at 20mg or lower. It's not easy for us to tell you what 'should' be happening regarding the blood and urgency, because every person reacts to these medicines differently. Use the search bar at the top of the page to find other people's stories. The important thing is that pred is helping you a lot, and for now that's brilliant.

I also advise you not to get too obsessed getting back to the state you were in pre-diagnosis - that's going to take time, and for some people it's hard to achieve. This is a life-long disease, but remission is possible.

The important thing to remember is that prednisolone isn't a maintenance drug. It's going to help you while you're on it, but the effects won't last forever. Hopefully it'll give you time for the Asacol to kick in. And you should also be prepared for the fact that pred messes with your emotions big time. It's great that you're feeling happy now, but it can also swing the other way.

Good luck with it, and try not to agonise over it too much yet, that will only make it worse. Hope you feel better soon!
Posted 8/10/2014 12:13 PM (GMT 0)
I totally agree with mal - the only thing I would add is to go up to the max dose of asacol, which is 4800 mg/day and ask you doc for some rectal meds -

worry is ok and normal -

good luck -

and it truly sucks that you're here :-(
Posted 8/10/2014 3:55 PM (GMT 0)
Thank you malaika and soystud for your input. I know I need to deal with things as and when they present themselves as opposed to planning for things that may not arise. I own my own business and it requires a lot of pre planning of endless possibilities that may or may or not happen. I guess I have to detach myself from those in built traits with my UC.

Soystud ill talk to my GI consultant about your suggestions.

Wish me luck and thanks again.
Posted 8/10/2014 8:59 PM (GMT 0)
You should also talk to your GI about mesalamine enemas, and the possible need for a full scope.

Welcome to the forum!
Posted 8/10/2014 9:27 PM (GMT 0)
Thanks Kazbern.

They want to do a full scope in approx 1 year because the treatment plan wouldnt be different. Is that correct? 4 biopsies confirm UC vs Crohns.
Posted 8/11/2014 11:57 AM (GMT 0)
I'm on prednisone for the first time, and just finishing up my 4th week at 40mg. Tomorrow I begin tapering by 10mg per week. So, I'm no expert, but this is what I've noticed so far:

I saw a change after about 5 or 6 days - somewhat reduced frequency/blood/urgency and some solid stools (1-2 per day). First thing after getting up was by far the worst time for me (many days I would wake suddenly and could not move fast enough from the bed to the toilet).

After that initial change, I didn't notice any further changes until this weekend. Now I have no blood, further reduced frequency, almost all solid BMs, and if I get my courage up I can actually pass some gas without messing myself. I'm still having some urgency issues, especially in the morning, but things are much better.

So, I would say that prednisone is working a bit slower than I thought it would. I was very pleasantly surprised by this weekend's progress, but I'm bracing myself for the taper and hoping that I don't backslide.

Good luck!
Posted 8/11/2014 1:26 PM (GMT 0)
DRR: What else are you taking? You will get worse as you taper to the lower doses unless you have an effective maintenance med therapy already in place.
Posted 8/11/2014 1:38 PM (GMT 0)
tyrion, the treatment plan might not change if you had a full scope now, but you would have a lot more knowledge about the condition of your colon. At this point you only know about what the flex sig could see, and that's probably just a few inches of colon.
Posted 8/11/2014 3:02 PM (GMT 0)
Sorry, I need to update my signature. I am currently taking the full dose of Asacol HD (I switched to Asacol from Lialda at the same time I started the prednisone) and VSL#3.

I was also taking mesalamine enemas, but my prescription ran out two weeks ago. I called and tried to get a refill, but my doctor wants to wait until my next appointment to see how I'm doing. He seems to be a good doctor, and I like him, but I don't understand this. Last appointment we talked about what would happen if things weren't better by my next appointment, and he said the next step is Imuran. He's already had me do some bloodwork in case that is necessary, so my only thought is he's saving me the trouble of the enemas because he thinks I'll need to make that switch.
Posted 8/11/2014 7:37 PM (GMT 0)
Thank you DRR for your input. Its extremely reassuring that I can expect further improvement and that we all respond differently to the same medication. Im glad your condition is improving and Ive found I have genuine concern and love for anyone else with UC.

Kazbern, you're right about knowing everything about the specifics of your condition and I will go back to my consultant with your advice.

Thank you Guys, God Bless!
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