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Posted 10/28/2012 10:22 PM (GMT 0)
After a little over 2 weeks of Asacol + mesalamine enemas not kicking this flare, and still having D and blood and all of that stuff, my GI decided it is time to try the steroids. We're doing a 40mg dose once a day to start, and I took the first dose Friday. Second dose last night, Saturday. Already there is almost 0 blood, very little D, and after just 1 dose I was able to go to my big Halloween party last night and have a great time and not visit the bathroom once over 4 hours!

If the blood is gone by Tuesday (which I think it will be) we start tapering down. Best case I only take these for 2 more weeks or so.

No ill effects yet, but it has only been 2 days. Actually, I'm noticing the heightened moods, but my GI said I'm already on an emotional roller coaster - I guess the fact that your body is attacking itself does that anyway - so the first night was a little weird.

My GI also gave me a giant packet of VSL 3 samples, and told me the biopsies show that the UC is very limited just to the very end of my colon. He showed me on a diagram and it looks like it makes it just barely up into the sigmoid colon, and everything past that was very clean. He made sure I understood that it could, theoretically, spread, but in many people it stays put if you get it under control with meds.

My vitamin D was fine, all of my bloodwork was fine, (even my CRP level was lower than it normally is), so GI says to go with the paleo diet, probiotics, extra sunshine if it makes me feel better, and we should see some progress soon.

Sorry that was rambling...I was so terrified of the Prednisone but it seems to be having an immediate effect!
Posted 10/28/2012 10:26 PM (GMT 0)
Great news! Make sure you don't taper too quickly, give some time to heal and don't just jump the dose down as soon as you see results. Even a 6 week course is not too big a deal.
Posted 10/28/2012 10:27 PM (GMT 0)
Congrats! Pred does have its place. The first time I used it was the same way for me. Loved it but did start having side effect-ate everything in sight, gained weight (obviously) and the dreaded moon face. The second time I used it wasn't so effective. I was on it forever it seemed like and had more side effects. Hope your able to start tapering quickly. Glad its helping you!
Posted 10/28/2012 10:29 PM (GMT 0)
Good advice, thank you. I'm definitely one that wants to say "I'm cured, let's stop the drugs!"
My GI will keep me in line. I do keep staring into the mirror waiting for my face to puff up or some hump to grow on my back. I know, unlikely in 2 days, but taking any meds at all is a new thing for me :)
Posted 10/28/2012 11:22 PM (GMT 0)
Prednisone can be like a miracle with UC symptoms but keep in mind you do NOT want to be on it long term. Glad it worked so fast and that you are feeling better.
Posted 10/29/2012 12:13 AM (GMT 0)
meyerlemony: Prednisone can be a wonderful drug but to put things in perspective, it cannot cure anyone long term. UC is an autoimmune disease where the body is tricked into destroying itself. Prednisone suppresses your immune system, which stops the attack and gives your colon time to heal - as long as you are taking it. Once you taper down too low or completely off your body will resume the attack all over again. You need to take it long enough for your colon to actually heal and then taper completely off and use maintenance drugs or treatments for the rest of your life to keep your UC in check. Make sure you take it long enough for your colon to heal or as soon as you taper down or off your UC will surely return. You don't want to be on it so short of a time that your colon doesn't have time to heal and you don't want to be on it too long or the side effects will make your life miserable.
Posted 10/29/2012 12:14 AM (GMT 0)
Good luck with the pred. For some people, it can be magic, especially if you're able to taper off quickly and experience very little side effects. If you're on and off in 3 months, you shouldn't have too many problems. My 3 month taper turned into 6 months, then a year... these are the types of situations that make people hate the drug but in most cases, it's probably not the norm. It's great that you're feeling better.
Posted 10/29/2012 1:39 AM (GMT 0)
Wonderful drug! Check my sig and do not make my mistake and assume a course of prednisone will fix it all and then youre cured. Keep a diet and maintenance drugs from your GI. As you can see prednisone in my case doesnt work forever. Glad to see someone doing great :).
Posted 10/29/2012 2:16 AM (GMT 0)
Pretty much what Gary said.

Steroids have their upside but often are just a band aid. So as he said it's important to taper properly and be very mindful at the last part of the taper. Ensuring you have a maintenance med regime already in place i.e mesalazine and probiotics etc is crucial. Essentially, so that you're not just going to relapse once the band aid is removed.

So yes embrace the healing that steroids allow but don't be fooled that all will be OK if you haven't healed and don't have your maintenance plan in place, diet management/modification is also worth looking into.

Good luck!
Posted 10/29/2012 4:07 AM (GMT 0)
Thank you for all of the advice! I should have added: I'm to continue the Asacol indefinitely and the mesalamine enemas for 3 more weeks. I'm also doing the VSL 3 and doing mostly fish, lower fiber veggies, and rice for diet an trying to keep a food log. It is paleo-ish.

I was just shocked at how fast it worked, and the plan is a taper off over 3-4 weeks. My GI is very, very closely monitoring it. It still amazes me that when I call him I always have a call back from him within a few hours.

It has been very frustrating since I was probably in the best shape of my life 4 months before this started - I was riding multiple horses each day and training for the AIDS Lifecycle (575 mile bike ride from San Francisco to LA) before this. Talk about your body betraying you!

So 1 day of pred making it possible to go to my big Halloween party seems amazing :)
Posted 10/29/2012 4:34 AM (GMT 0)
Hello meyerlemony,

It is great news that you are feeling better with the prednisone. Allow me to humbly offer some advice if you have only recently been diagnosed with ulcerative colitis.

1. Follow the instructions of your doctor, specifically with respect to dosing schedules for prednisone. I am certain that I am not alone in having been irresponsible enough to disregard my doctor's advice and choosing my own dosing schedule: which sometimes meant resisting the use of prednisone which only allowed my symptoms to worsen without early intervention with short term solutions like prednisone, and sometimes meant reducing the dose and tapering too abruptly, which allowed symptoms to come back quickly. Please listen to your doctor and do not abruptly reduce your dosage of prednisone simply because you think you don't need it anymore. Perhaps you are already wise enough not to need this advice, and if you are I apologise if I seem as if I'm patronising.

2. Understand that with few exceptions, prednisone is not a long-term solution due to problematic side effects in both the short-term and long-term: edema, hair loss/acne, sleeplessness, increased appetite, atrophy of your musculature and adrenal glands, and reduction in bone density. Ideally, prednisone is simply a short-term boost for you before you find a a more permanent solution which will likely include some type of medication(s) that can be used more safely and more comfortably over the long-term.

3. I was on this forum quite awhile ago, but I have returned simply because I feel like I have some advice to offer as person who probably understands what you and many others in here have experienced: I also have ulcerative colitis.

Allow me again to reiterate that I am sure I am not the only one who is glad to hear your post indicating that you are experiencing significant relief. It is great news.
Posted 10/29/2012 4:36 AM (GMT 0)

hekela said...
Great news! Make sure you don't taper too quickly, give some time to heal and don't just jump the dose down as soon as you see results. Even a 6 week course is not too big a deal.

I second this warning. Although meyerlemony seems to be the type to listen to the doctor, unlike some others (which has included me, in the past).
Posted 10/29/2012 4:38 AM (GMT 0)

sherbear46 said...
Congrats! Pred does have its place. The first time I used it was the same way for me. Loved it but did start having side effect-ate everything in sight, gained weight (obviously) and the dreaded moon face. The second time I used it wasn't so effective. I was on it forever it seemed like and had more side effects. Hope your able to start tapering quickly. Glad its helping you!

I've had quite a few flares, and prednisone worked exceedingly well for me with my early flares. As years progressed, prednisone was increasingly ineffective in treating subsequent flares. I believe that part of of this is my fault due to irresponsible decisions I made particularly with respect to my dosing schedules with various drugs.
Posted 10/29/2012 4:40 AM (GMT 0)

meyerlemony said...
Thank you for all of the advice! I should have added: I'm to continue the Asacol indefinitely and the mesalamine enemas for 3 more weeks. I'm also doing the VSL 3 and doing mostly fish, lower fiber veggies, and rice for diet an trying to keep a food log. It is paleo-ish.

I was just shocked at how fast it worked, and the plan is a taper off over 3-4 weeks. My GI is very, very closely monitoring it. It still amazes me that when I call him I always have a call back from him within a few hours.

It has been very frustrating since I was probably in the best shape of my life 4 months before this started - I was riding multiple horses each day and training for the AIDS Lifecycle (575 mile bike ride from San Francisco to LA) before this. Talk about your body betraying you!

So 1 day of pred making it possible to go to my big Halloween party seems amazing :)

I am very surprised that you have been prescribed enemas and asacol prior to prednisone. When an ulcerative colitis flare up is occurring, particularly for those new to the illness, prednisone is sort of a first-resort for short-term relief in order to buy some time to allow other drugs to kick in which require this extra time to be effective, i.e. Asacol, Remicade, Humira, etc.
Posted 10/29/2012 9:38 AM (GMT 0)
I have a very similar storey.  although im only now tappering the enemas after 5 months and will continue using them as part of my maintance plan. 

all the best.

Posted 10/29/2012 1:29 PM (GMT 0)
Gavriel, I'm not surprised she was prescribed the oral + rectal mesalamine prior to pred. I honestly think that's the best course, as some people don't need pred to gain remission.

At any rate, I eventually had to resort to pred to gain remission. I was only on it for 1.5 months total, and the majority of that time was 15 mg or under.

I would, however, plant to stay on the enemas NIGHTLY until you're completely off pred and have remained symptom-free for at least 2-3 weeks. Then I'd taper to every other night for 2-3 weeks, and if all is still well, taper to twice weekly, and stay there. Studies show that patients who use mesalamine enemas in conjunction with oral meds stay in remission longer than those only using oral meds. This is what I am doing and I've been in remission for close to 3.5 years now.
Posted 10/29/2012 6:07 PM (GMT 0)
I really, REALLY didn't want to take any kind of steroid. Also, I believe my GI was waiting for the final colonoscopy results to come back, along with the bloodwork, etc. I may have to refill the enemas. I'm just now, after about 2 weeks, getting the hang of it, getting it to stay in all night, and all that fun stuff. Mostly from the helpful tips here...you know with all of that packaging and instructions, no one ever says "squeeze the air out dummy." Luckily my insurance covers generics, so the enemas only cost me $100. No brand name coverage, so the Asacol is running me about $380 at Costco. That bites, but whatever I have to do I guess. I may look into switching. I have a good plan, Blue Shield PPO, but it is one of the cheaper ones.

This is my first time being really, actually sick, so all of these meds are totally new to me. My old regimin consisted of birth control, sometimes stuff to control acne, and ambien (litigator insomnia...running through arguments and case law in my head is baaaad).
Posted 10/29/2012 6:12 PM (GMT 0)
I'm glad you're feeling better. ITA about the air in the enema bottle. Maybe some pharma marketing rep will read this and improve the packaging inserts, LOL.

I started using generic colazal last summer and it is working well for me (balsalazide). You might want to talk to your DR about that.
Posted 10/29/2012 6:13 PM (GMT 0)

fruitgirl said...
Gavriel, I'm not surprised she was prescribed the oral + rectal mesalamine prior to pred. I honestly think that's the best course, as some people don't need pred to gain remission.

But if someone's flaring severely, why risk it? Prednisone has a higher likelihood of short-term success, and if successful it provides relief MUCH more quickly than mesalamine (oral or otherwise). It would make more sense to use an all of the above approach, and by the time the patient begins to taper the prednisone within a few weeks, the mesalamine (if effective) will have begun to provide relief, allowing a successful tapering of the prednisone with longer-term prospects of relief.
Posted 10/29/2012 6:15 PM (GMT 0)

meyerlemony said...
I really, REALLY didn't want to take any kind of steroid. Also, I believe my GI was waiting for the final colonoscopy results to come back, along with the bloodwork, etc. I may have to refill the enemas. I'm just now, after about 2 weeks, getting the hang of it, getting it to stay in all night, and all that fun stuff. Mostly from the helpful tips here...you know with all of that packaging and instructions, no one ever says "squeeze the air out dummy." Luckily my insurance covers generics, so the enemas only cost me $100. No brand name coverage, so the Asacol is running me about $380 at Costco. That bites, but whatever I have to do I guess. I may look into switching. I have a good plan, Blue Shield PPO, but it is one of the cheaper ones.

This is my first time being really, actually sick, so all of these meds are totally new to me. My old regimin consisted of birth control, sometimes stuff to control acne, and ambien (litigator insomnia...running through arguments and case law in my head is baaaad).

I completely understand your desire NOT to use prednisone, but if it is prescribed to you my advice is to bite the bullet and use it as recommended. As frustrating as the side effects of prednisone are, it's important to remember that they are temporary and relief in the short term can be very important to the health of your colon in the long term.
Posted 10/29/2012 6:19 PM (GMT 0)
Because there's no reason, IMO, to expose the patient to the possible VERY SEVERE side effects that can come with even a short course of pred if it's not warranted. Mesalamine alone can make a very big difference very quickly, even in severe cases. I was in a severe flare when I was diagnosed -- upwards of 15-20 very urgent BMs a day, drastic weight loss, low fever, high pulse, etc. My doc started me on Asacol alone for the first 7-10 days (I can't remember how long) and after seeing very limited improvement, added the mesalamine enemas. I had a DRASTIC improvement almost immediately. I almost achieved remisison, then caught a tummy bug from my son which stirred the flare up again. At that point, I had an interview quickly approaching and I had to get well ASAP. So we started pred.

I think there's good reason to see if there will be a fast response to mesalamine alone, if the patient isn't on death's door and can get by despite the symptoms.
Posted 10/29/2012 6:21 PM (GMT 0)
And OP, I think the patient assistance program for "regular" Asacol is no more, but there are programs for Asacol HD, Lialda, and Apriso (at least I think there is for all three...check the drug company web sites). You can use it in conjunction with your insurance to help with the copay. Some pharmacies will take care of the paperwork for you and just knock that amount off your total bill, while other won't, and you have to submit the paperwork and get the check from the drug company itself.
Posted 10/29/2012 6:27 PM (GMT 0)

fruitgirl said...
Because there's no reason, IMO, to expose the patient to the possible VERY SEVERE side effects that can come with even a short course of pred if it's not warranted. Mesalamine alone can make a very big difference very quickly, even in severe cases. I was in a severe flare when I was diagnosed -- upwards of 15-20 very urgent BMs a day, drastic weight loss, low fever, high pulse, etc. My doc started me on Asacol alone for the first 7-10 days (I can't remember how long) and after seeing very limited improvement, added the mesalamine enemas. I had a DRASTIC improvement almost immediately. I almost achieved remisison, then caught a tummy bug from my son which stirred the flare up again. At that point, I had an interview quickly approaching and I had to get well ASAP. So we started pred.

My perception was that Asacol or mesalamine enemas took longer to start providing relief. If your experience is typical, I completely agree with you. Still, I think you're exaggerating the risk of prednisone by characterising the possible side effects of a short term cycle as "VERY SEVERE". Prednisone's anger lies more in long-term use. It really is a wonder drug for buying some time in the short-term to allow other drugs to begin providing relief, sort of a relay race where prednisone starts the race and some other drug takes the baton for the marathon.

fruitgirl said...
I think there's good reason to see if there will be a fast response to mesalamine alone, if the patient isn't on death's door and can get by despite the symptoms.

I don't like this attitude towards the drug, prednisone is not some ultra-risky drug to be used only as a last resort when a patient is on "death's door". Yes, it is highly unpleasant, but it is a drug that has many decades of research and use behind it, as many millions of successful applications. Moreover, procrastinating intervention with prednisone can lead to a worsening of one's condition in both the short term and long term, with risks I am sure you are familiar with.
Posted 10/29/2012 6:40 PM (GMT 0)
"At death's door" was perhaps an overstatement. However, if I'm remembering correctly, the OP's symptoms weren't all that severe initially. And I wasn't saying the OP shouldn't have been Rx'ed pred after trying oral + rectal mesalamine for two weeks with little to no improvement, as appears to be the case here. I was saying that I don't think it's something to prescribe immediately in most cases. I have a coworker who was recently diagnosed with UC, who was given pred along with mesalamine. I think it was a smart move on his GI's part, given how severely anemic he was.

And yes, some people do experience very severe side effects from pred almost immediately.

If you'd read past posts, you'd see that I often recommend people try pred when mesalamines aren't working. I don't think it's wise to let a patient continue to flare.
Posted 10/29/2012 6:52 PM (GMT 0)
You guys have the right idea. It was bad, but it wasn't "death's door" bad. Not anemic, good vit D levels, 0 weight loss (don't get mad, but part of my thought "hey, if I'm going to have this, can I take off 5 pounds at least, hey thanks!"), all of my bloodwork looked fine...it was just blood + frequency ("just") that would not go away. I just didn't respond quickly to the Asacol/mesalamine, and my GI doesn't want any damage done in there since it is in a limited area now.

I'm ok with the Pred. for short term. I just didn't want to if I didn't have to.
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