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What to expect /w GI appointment after 2nd week on Pred

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Posted 1/21/2013 2:50 PM (GMT 0)
I've never been on pred before, and this is my first flareup since my initial diagnosis last year. I'm on my 2nd week of Prednisone and seeing my GI tomorrow. What should I ask/expect? I am guessing tapering off the pred is going to be started soon (and staying on my current Lialda and Rowasa for a bit). What's a typical taperdown regiment? Is he still going to taper me even if I have such variation in my bms (described below)? My GI's plan is to put me on Purinethol (mercaptopurine) in time, but I assume that is once I am tapered down enough on the pred, I assume (is it 5mg before you can?). I know some of you are against 6mp but I've been at a daily of 5grams of oral and a daily of 4gms of rectal meslamine for 3 months and then this flareup -- I don't think meslamine is enough anymore and my uc has spread upwards.

The pred has helped as the blood is gone, and my bm frequency is down, however, I am still going way too much. I went poop 6 times yesterday (but 6 times is better than the 12-20 I had when this flare started). My poop varies from water, to semi formed, to formed within the same day. I'm still having issues with urgency sometimes (I had to stop the car on an off-ramp yesterday and run down to a storm culvert to poop and still got a little on my underwear) and that was a short 4 minute drive back from the gym.

The side effects I've noticed since taking pred are my blood pressure is now a steady 104/75 (slightly out of normal) unless that means I am slightly anemic from blood loss? And the pred has made me much more restless during my nights sleep (getting up sometimes 4 times during a night).
Posted 1/21/2013 5:43 PM (GMT 0)
I would expect your GI to ask you about your blood, pain and bowel movements (and how you are feeling). If he doesn't ask, make sure you share this information.

Don't necessarily anticipate tapering off of steroids yet. Your GI might want your BM's down more and your poop to be more consistent.

Also, don't be surprised if you are on Lialda for a looong time. It's considered a long term maintenance drug. The Rowasa they migth taper you off.

I've seen varied taper schedules. I've had tapers of 5 mg per week. I've also had tapers at 2.5mg per 10 days. Others taper at 5 mg for awhile and then taper at 2.5 for awhile then taper at 1mg when they get below a certain point (say 5mg dose). It really depends on your doctor and how you feel.

The restlessness is typical. Is your top number of your BP low for you? Pred typically causes HIGH BP, but I think it generally takes awhile to really cause that.
Posted 1/21/2013 6:02 PM (GMT 0)
Usually pred and 6mp are taken at the same time so that by the time you are done tapering (2-3 months) the 6 mp starts working.
Posted 1/21/2013 6:54 PM (GMT 0)
IMO, you should be taking probiotics daily as well as a good multivitamin with iron and vitamin D3 ( I use 2000-3000 IU daily).
Also consider eliminating lactose and gluten for at least 6 - 8 weeks to see if you get results.

I used Rowasa (generic mesalamine) enema for years with no ill effects. In fact I recently asked for a scrip when a colonoscopy revealed that I have some remaining inflammation on the left side.

I have been taking oral mesalamine (Colazal generic) for 10 years, again with no ill effects.

When I found this forum last year I adopted some of the suggestions of contributors....taking l-glutamine and slippery elm powder as well as eliminating lactose and gluten. Have made a lot of progress.

I also used transdermal LDN for about 10 months during 2012 but stopped because of sleep issues.
Never used pred or any stronger med. I'm not familiar with some of the meds you mention but be careful to investigate potential side effects before agreeing to take a drug.
In my experience, doctors don't volunteer a lot of info on side effects.

Check this out:
http://www.medicinenet.com/mercaptopurine-oral/page2.htm#SideEffects

Your blood pressure looks low to me.
I think anemia would show up in a blood test for iron level.
Has your doctor ordered a complete blood test that also includes indications of possible liver issues?

I find that I can control my situation pretty well now and do not worry about going out. Still stake out the bathrooms but think I often do it to avoid the stress of "not knowing" just in case.
Good luck to you.
Posted 1/21/2013 7:10 PM (GMT 0)
Seems like the tapers can be quite different then. I certainly don't want to taper to soon or too fast or else I'll be back in square one again (bleeding and flaring badly like before).

ItsAlwaysSomething, I am considering doing a trial glutten free thing. But I think for now I am going to wait until I am off the pred and stabilized some in my condition. Otherwise, it might be a little to hard to determine what the improvement was because of (pred, mp6, other).

Yeah, I had a blood test done a couple weeks ago and I plan to ask the results when I see my GI tomorrow. I would imagine my iron levels and such would be on there. They did a pretty comprehensive panel.

It just seems like my heart is running at a higher rate when I am at rest then it used to. The nurse said I was a bit out of normal when she checked my blood pressure for the last two checks (jan 7th and again on the 8th). I don't think I'm usually above 100/80. Now I am. I don't think it is anything to loose sleep over yet, but something that lingers in the back of my mind in quiet/idle moments.
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