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Considering asking for oral pred again...opinions?

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Posted 8/31/2009 4:10 PM (GMT 0)

Hi All, I would love your thoughts on my situation...

 

I have only been on oral pred once before, about a year ago.  At that time I had been in an almost constant flare for a year and it was getting worse and worse.  Lots of blood, extreme urgency, cramps, multiple BM's per day...I had tried everything that my doctor prescribed over the year with no success - Canasa, Cort Enemas, Lialda, foam enemas and combinations of these...so I was finally ready to try oral pred and welcomed the relief it provided.

 

Now skipping to the present, I have been in a mild to moderate flare for about 3 months.  I am having some daily bleeding, mucous and moderate cramping.  I have 2-3 BM's per day most days with mild urgency.  I am on Lialda (have been for almost two years); we added cort enemas at night and Canasa in the morning but cannot get out of this flare.  I have been on the Canasa for about 12 weeks and the cort enemas for about 6 weeks.  It is not an extreme flare but is very stubborn.  I can tell that it is just the lower part of my rectum that is still flaring.  I have an appointment with my GI tomorrow and am considering asking for a short round of oral pred to try to kick this into remission.  I am not excited about taking oral pred for a milder flare but am not sure how else to get this to stop.  We want to start trying to get pregnant soon and I would like to be in remission.  Any thoughts???

Posted 8/31/2009 4:14 PM (GMT 0)
Did the oral pred give you many bad side effects? If not, I'd probably ask for it, but tell your GI you want to do the quickest course you possibly can. I did a pretty quick course and it worked really well! A lot of people on here thought it was dumb, but you know what? They aren't GIs!

I just read your sig, though, and saw that you're just on 2 Lialda...maybe try upping that to 4 first and see what happens?
Posted 8/31/2009 4:18 PM (GMT 0)
fruitgirl - what's a quick course of prednisone? or should i ask, what was the course you took?
Posted 8/31/2009 4:23 PM (GMT 0)
Hi Fruitgirl,

I had minimal side-effects from pred last time but I was on it for almost three months.  I had some face swelling and water retention, some night sweats and some insomnia...the mild side-effects were worth the result though for me.  If I have to be on it again I am hoping for a short 2-3 week course since this flare is much milder...

I need to update my Lialda dose because I have recently upped it to 3 but I may need to go back to 4. I was on 4 for a long time. I will try it again because if that will help I would rather that than pred. but it is nice to know a short course worked for you. I have noticed though that 4 Lialda seems to give me very soft stool and mild cramping so it is sometimes hard to tell if I am still flaring or if it is the Lialda causing it. Isn't this such a fun disease! :)

Posted 8/31/2009 4:23 PM (GMT 0)
I did 40mg for 5 days, 30mg for 5 days, 20mg for 5 days, 15mg for 5 days, 10 mg for a little over a week (while I was waiting to see my GI to decide on the next step), then 10 mg every other day for 2-3 weeks. The only reason I did the 10 mg every other day for as long as I did was b/c I had a big job interview coming up, and didn't want to risk having any problems.

Most people thought it was too quick of a taper and that my symptoms would just come back. Well, they clearly didn't! And I even had a bout of food poisoning that stirred things up when I was I was down to 10 mg every other day.

So it wasn't all that quick, really, but quick in comparison to what a lot of people on here do...you know, 40mg for at least two weeks, then taper much more slowly.
Posted 8/31/2009 4:26 PM (GMT 0)
Thanks for the explanation, I am in fear of needing to go on pred as well. I thought I was in the clear, but I had blood again this morning while wiping after being blood free for 3+ weeks. Not sure what the hell is going on anymore...
Posted 8/31/2009 4:37 PM (GMT 0)
Fruitgirl, did you have any pred side effects doing the shorter course?
Posted 8/31/2009 4:42 PM (GMT 0)
I agree,
It might be worth a try to do a quick course of prednisone, see what it does for you. And your doctor might have dealt with enough people to know if it has worked...and now you know it did for fruitgirl!

But what you describe was not a flare for me, but what I lived with for 20 years between flares. I would not have used prednisone for that level of disease, or I would have been on it all the time. Hopefully you will be luckier! Think good thoughts.
Posted 8/31/2009 4:46 PM (GMT 0)
Just a LITTLE bit of moonface and some munchies. I think the munchies were more driven by the fact that I FINALLY felt like eating, after not wanting to eat for so, so, so long. I slept like a rock the entire time I was on it. At the time, I thought I had a lot of energy, but now that I'm well and off pred, I think it was more that I just felt normal again...it had ben SO long since I'd had a normal energy level, because I went from being pregnant to being a new mommy to being a really sick new mommy......

And to follow up on what Peety said about your symptoms being mild, the only reason I even thought it would be ok to ask for pred is because you want to get pregnant and I personally wouldn't TTC if I had ANY symptoms. 

Posted 8/31/2009 4:57 PM (GMT 0)
My first GI, a really good one who did lots of drug studies, told me he had many woman patients who had their best remissions when they were pregnant...and so tried to stay pregnant as much as possible and had lots of children!
Posted 8/31/2009 5:14 PM (GMT 0)
Haha Peety! There's no WAY I'm having more that one more pregnancy (I don't say more that one more child b/c the possibility of multiples is always there!) whether it gives me a really good remission or not!

I just think it's not wise to get pregnant if there's any sign of a flare at all, because some women do get worse when they are pregnant, and I wouldn't want to risk a miscarriage or harming the baby.
Posted 8/31/2009 5:55 PM (GMT 0)
fruitgirl I don't think your prednisone course was quick, as you were on prednisone for about 2 months.

Some people have posted here about trying a short course of 2-3 weeks, as a quick fix, and then stopping. That's quick, and that's when I would probably recommend slowing things down a bit instead. Also, another time I would recommend slowing the taper down is at lower doses (just as you did).

Otherwise, if prednisone works for someone, then 2-3 months on a course of prednisone seems standard to me (...well, whether it was quick or not, it's great that it worked for you).

And you're right that your GI should know best and should be guiding the taper (and not the opinions that you read on the forum)
Posted 8/31/2009 6:04 PM (GMT 0)
I also did a quick course of pred, starting at a moderate dose (40mg) and quickly tapering, the last time I had a mild flare. It worked wonderfully for me and I had no side effects. However, I do alot of other things to support my GI heatlh, so your mileage may vary, as they say.
Posted 8/31/2009 6:13 PM (GMT 0)
Well, I guess i was thinking it was quick compared to what a lot of people on here do (and a lot of people criticized it as being too quick and tapering too quickly)! I mean, I hear of people being on 40mg for two weeks, then only tapering by 5mg every two weeks. That's a really long and really slow taper...I guess if you have a history of difficulty tapering, it makes sense.

And I would have been on it a MUCH shorter time had it not been for the interview...I stayed on the 10mg every other day because of that. Looking back in my calendar (yes, I made notes!) I started on March 16 and took my last dose on May 26. I would have been off by around April 15 or so if I'd not had the interview.
Posted 8/31/2009 6:26 PM (GMT 0)
Thank you all so much for your thoughts. I agree that this is a mild flare but it is a flare for me because when I am in remission I do not have daily bleeding and cramping. I also have more formed stools than I am having now. However, I am VERY happy not to be in a horrible flare and that is why I am uncertain about asking for pred. As fruitgirl stated I would probably not even consider pred at this time if I were not planning to start trying to get pregnant this fall. I really appreciate Peety's information too - I will HOPE that I am one of those women who improve with pregnancy - however, I think that this will be my last time around that block - I have one perfect child but was not one of those who LOVED being pregnant - love the result just not the 9 months in-between! :)
Posted 8/31/2009 6:32 PM (GMT 0)
Well, I hope that you get in remission soon and get pregnant quickly (unless you have lot of fun with the "trying" part of trying to conceive!). ;)

And you never know, this pregnancy might be a lot easier! My mom had horrible morning sickness with my older sister and breezed right through with me. If I stay in remission, my DH and I will have another baby, and I hope that I have another pregnancy like my last. Bascially NO nausea and I felt great until the last couple of weeks, when I was just big and uncomfortable...and I only made it to 37 weeks as my little boy was apparently impatient! :)
Posted 8/31/2009 6:44 PM (GMT 0)
Hee, hee, hee - I hope so! I had "morning sickness" for a few months but my main issue was swelling - I looked and felt like a blimp at 5 months pregnant. Everyone kept asking if I was having twins! I am 34 and other than this UC junk I am in pretty good health and workout regularly so I am really HOPING that I can get pg and that I have an uneventful pregnancy! Thanks!
Posted 8/31/2009 6:46 PM (GMT 0)
fruitgirl, you're right that it's all relative. I've read about some of those crazy year-long tapers too, so it goes without saying that it's better to get off prednisone as soon as you reasonably can. I voiced an opinion because I feel that a taper shouldn't be rushed without reason, because this is such a strong drug that if you're going to use it, then use it the right way.

thatfield, even though you're only flaring mildly, you've definitely got a valid concern about trying to get into remission soon...especially as it's important to get things under control so that they don't worsen. Good luck with it.
Posted 8/31/2009 7:39 PM (GMT 0)
It has been my experience that all flares start out mild but then ramp up quickly. If you are feeling like this is the beginning of a flare I would nip it in the bud while you still can. If I wait too long, I usually end up on much higher doses of pred for much longer than when I have gone on it right away.
Good luck.
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