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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone and me, a personal diary


 
01-25-2007, 02:57 PM   #1
Kev
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Prednisone and me, a personal diary

Hi all. Thought that this might prove beneficial to anyone not yet prescribed the drug Prednisone. I plan to detail the course of my first exposure to this drug on a day by day basis for the next 5 weeks. The game plan is for me to start on a conservative dosage (20 mg) for two weeks, then drop to 15 mg in week 3, then 10 mg in week 4, then 5 mg in week 5, then stop. (we'll see). To put this into context, I'll provide a brief background on myself and my disease.
I'm in my 50's, a resident of Nova Scotia, Canada. I first started showing the early signs of IBD approx. 20 years ago. Started with a lactose sensitivity. It was followed by an episode of severe proctitis in the early 90's that wasn't at the time correctly diagnosed. Then in 2001, I became seriously ill with a form of pancreatitis (the cause at the time was never determined). Then in late 2004 & early 2005 I became seriously ill, until hospitalized starting in April 2005 and then on & off again numerous times over the past 2 years with pancreatitis, cysts, & diverticulitis.. I have had a number of operations during this time, including the removal of my gall bladder, and an anterior resection of the colon in which they removed approx. 1 1/2 feet of the large intestine. At the time, the doctors thought it was diverticular associated colitis, and it would respond permanently to surgery. However, despite all of the operations
my IBD invariably returned. In July of 2006 I was diagnosed with some form of IBD.. It has the appearance of Ulcerative Colitis, but many symptoms of Crohn's Disease.. None of the lab tests or examinations are conclusive as to the exact nature or name of my particular disease. At the time of this latest diagnosis, I started a regimen of 4 g of Salofalk (an anti-inflamatory), plus a low fat, low fibre, high protein diet, and the introduction of vitamins, enzymes and probiotics. This caused a slow, steady gradual decrease of my symptoms
up until late November of 2006. A two week trial of the drug Cortifoam began
early January of this year. It yielded no positive results, in fact my condition worsened. That was when my doctors and I opted to try Prednisone. I have been aware of this drug for quite a while, and it's use has been discussed on a number of occasions. Having heard some of the horror stories on this and other IBD related sites, and having discussed the potential side effects with my doctors, it was mutually agreed to explore all other options before taking this step. And, although these had worked for a while, at this stage they've all stopped, and there is literally no other viable option than to take this drug.

Okay, so now everyone is up to speed. I'll try to keep the day to day diary short and sweet (or bitter, or whatever the case may be), from now on. OK?

Wednesday, January 24th, 2007 Day 1 First, a pleasant surprise. My other drug prescriptions are expensive, to say the least. Between my Salofalk and Cortifoam, I've spent approx. $400 CDN in the last 4 weeks. My prescription for Prednisone (and it is Prednisone, not a generic equivalent) is very cheap.
Maybe the pharmacy made a mistake?? Yeah, right, on just the drug price!
Anyway, I had a nice long chat with the pharmacist (no, I wasn't just given the drug fact sheet and shown the door).. Pharmacist went over all of the dreaded side effects, however her experience with the drug & her patients puts it into a kinder perspective. The really nasty side effects are rare, and the other really bad ones that I'd been briefed on typically apply to those who take the drug in larger doses over an extended timeframe. Based on this and my particular dosage, my initial fears about starting this drug have abated. So I start taking the drug Wednesday morning. It should be taken with food, so I ate breakfast. Took the pills. The world didn't end. Hip, hip, hooray. Then I continued my normal routine. I am now off the Cortifoam (thanx for nuttin),
but still take my Salofalk. I also opted to stop smoking.. (perhaps not such a brilliant plan - but more on that later).. Day 1, 20 mg down, and I noticed a marked improvement in my symptoms virtually immediately. Psychosomatic??
Well, my typical day consists of approx 8 - 10 urgent trips to the bathroom, plus periods of severe cramping (6 - 8 per day) lasting 45 min to 1 1/2 hours.
It wasn't until mid evening that I realized that I'd made only a few trips to the bathroom, and had not as yet experienced any severe bouts of cramping. Hey a guy could learn to like this. I was more than a bit manic, but can't swear as to whether this was Prednisone induced or due to nicotine withdrawal. So I head off to bed at my usual time, with little or no clear indications of any of the dreaded Prednisone side effects.. Until I try to go to sleep that is.. I am unable to settle down.. Now, this may be a side effect, or am I just elated at the lack of my typical symptoms? I dunno. Finally, sometime between 4 & 5 I conk out... don't wake up till 11:30 .. (2+ hours after I supposed to take my next dose of prednisone).. One of the first things I do is rethink (ok, cave in)
my stop smoking plan. Let's just put that on the back burner for the moment.
I do notice dry, flakey skin on my forearms. It isn't sore or itchy, and it is the dead of winter here, so it may or may not be related to the Prednisone. Time will tell. I've had a late breakfast/brunch, and have taken dosage number 2. See here tomorrow for the next installment of Prednisone and me, alright?
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01-26-2007, 12:42 PM   #2
Kev
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OK, Prednisone diary, Day 2. Brief re-cap.. Aside from some dry, flakey skin on my forearms, and a rough time getting to sleep, my 1st experience with prednisone has been great. Noticed significant improvement in my symptoms,
and minimal side effects (see above), and overall I'm feeling really great.. Then, around 6 PM last nite, with no warning whatsoever, I get a nosebleed.
Like someone turned on a tap. Ice pack to the back of the neck, head tipped back, pinch off the nostrills, and it soon passes. coincidence? I dunno.
I re-check the material that came with the prescription. No mention of this specific 'side effect' per se. Instructions on the material advise notifying the prescribing physician in the event of unusual symptoms. I think this falls into this category. But it's nite time now, so I call the patient helpline, get just a voice mail, leave my name and number, and a brief description of the issue. This aside, I'm still feeling pretty good. I haven't had a nosebleed since my younger days, and those were typically related to getting into a fight, etc.. Has anyone else ever experienced a nosebleed related to taking prednisone?
01-26-2007, 01:04 PM   #3
ruthymg
 
Hi Kev, funnily enough, I too had a couple of nosebleeds whilst taking Prednisolone and once I stopped the drug so did the nosebleeds. I too don't get nosebleeds and was also a little surprised. Apart from that though, I found the drug to be really effective and it put me in remission. Hope things continue to go well for you.


Ruth
01-26-2007, 05:42 PM   #4
Kev
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Hey Ruthymg Thanks for the input and good wishes. I've got my fingers X'd
01-26-2007, 06:48 PM   #5
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I had that happen a couple of times Kev while on the 'roids.
Bruising as well.
Glad to hear you are improving though.
I've been thinking about you and hoping you are okay.
Hugs~Nancy
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01-27-2007, 01:02 PM   #6
Kev
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Thanks Nancy Lee... It's only been 3 days, and I have improved.. but I seem to have reached a plateau. 11 more days before a follow-up Dr visit, but it looks like we may have to increase the dosage (unless there's further improvement). time will tell
01-27-2007, 01:18 PM   #7
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Prednisone, Day 3. OK, thanks to everyone who wrote. no further episodes of nosebleeds to report (at least so far). as for other side effects, getting to sleep at nite still presents a bit of a problem.. altho it appears to have calmed down a bit last nite.. got to sleep around 2 AM, which is a bit late for me.. Dunno if my body is aclimatizing to the pred or if I just worn out by the previous 2 late, late nites (4 - 5 AM plus). Makes getting up before 9 AM to take my pred a real challenge, esp. because I'm not supposed to take it on an empty stomach. My body is accustomed to getting up early, BUT it's not accustomed to eating that early. My prior regimen was to delay eating ANY food until after my first bathroom trip of the day.. Theory being that nothing goes in until something comes out (in case of blockage, constipation, etc..). Then, I'd normally take my 1st dose of Salofalk, then eat a small breakfast 1 hour later (as recommended by their website to reduce Salofalk side effects).
So, some adjustments had to be made. I start off with a small meal, take the pred., then wait 1 hour to take the Salofalk. Didn't want to take both at the same time.. It seems to be working.. I have noticed great improvement, less bloating, less cramping, less diarhea, overall less pain, esp at bedtime. It hasn't been an eureka, I'm cured, but it is still only Day 3. As for negative or bad effects, restlessness at nite, one episode of spontaneous nosebleed, and dry & flakey skin. This originally was on my forearms, but now is starting on my face... My eyes, and the skin around them, is so dry it is now cracking. esp in the corners of my eyes. I no longer have Crowsfeet, I now have an unusual case of Crows Athletes Feet. Funny, right? Except it hurts like hell.
Not really... more like a paper cut in the corners of my eyes (eer, eyelids). OK, that's it for day 3. Good results, some annoying little side effects, but on the overall, I'm pleased with the results of this prednisone treatment so far
01-28-2007, 08:59 AM   #8
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Hey Kev.

My experience with prednisone are that it helped med gain weight. Or rather my body binded fluids that gave me sort of an inflated look And facial acne. Not too bad though. Hope you feel good with this. maybe your difficulties falling asleep has to do with prednisone beeing a mild stimulant. like caffein?

Looking forward to read your diary and best wishes!

/H
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01-28-2007, 02:35 PM   #9
Kev
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Prednisone Day 4 Side effects to report.. a little moon faced today. Actually it makes me look 'healthier'. Up till 3 AM last nite, but thats a little better. As for benefits, my fears of plateauing yesterday now seem a little premature. (WARNING.. GROSS STUFF FOLLOWS). My bowel movements have today increased in diameter again.. now approx 2 fingers in dia. Seem to be a little more solid and well formed too.. 4 days down, and 10 more to go at 20 mg

Last edited by Kev; 01-28-2007 at 02:37 PM.
01-29-2007, 06:58 PM   #10
Kev
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Prednisone Diary Day 5 As in up till 5 AM in the morning. Whazzup with dat?
Otherwise, A-OK. Even more improvement.. but it would be nice to sleep at nite. Overall, a very small price to pay for the slowing of my downward trend.
01-29-2007, 07:41 PM   #11
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It's great to see you improving each day Kev!
I remember the no sleep syndrome...don't know what to tell ya.
It does that to me too.
Hang in there and keep that positive attitude.

Hugs~Nancy
01-30-2007, 01:38 PM   #12
Kev
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Prednisone & me, Day 6.. OK, the improvement continues.. As for the ol sleepis interuptus, last nite I crashed around 2. Dunno if I'm starting to lick that issue, or just exhausted..
01-30-2007, 01:52 PM   #13
Nancy Lee
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Hi Kev!
Good to see you're still improving...
As far as getting some sleep,
I think at some point your body just takes over and says....sleeeeeeep!
01-31-2007, 10:23 AM   #14
Kev
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Prednisone and me, Day 7 OK, it's been a week. No miracle cure overnite, but on the (w)hole I do feel better (OK, apologies to one and all for that one)

Seriously, improvement all around, today not so good as yesterday. Effects of the prednisone are low moderate to mild at 20mg. If anyone out there has not yet taken prednisone because of the horrible potential side effects that the doctors HAVE to detail before prescribing it, you may want to re-think it.

Having said that, I feel I must remind all who read this that I'm a relative newbie (diagnosed July of 2006), and have only taken a mild dose of pred for a week.. Long term effects may be different, and every case is different too. I will continue a Day by Day diary over the course of my slated 5 week series of treatment. It will be interesting to discover if my doctors ramp up the dose in approx. a weeks time, and then there will be the taper off process to report first hand. Wish me luck everyone, and pop in with your pred. tales of delight or woe too if you feel like. The idea is to share our knowledge/wisdom
01-31-2007, 02:45 PM   #15
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Hey... I was diagnosed in October of 2006 and then put on Prednisone at 40 mg... but it was way too much at first and they put me down to 30mg, and that wasnt enough so they went up to 60mg for about three weeks and then back down to 40mg until December. Since December I've been tapering down 10mg every two weeks and now I'm down to 10 mg, in a week I go down to 7.5 and then down by 2.5mg every two weeks until I get to 5 and then down 1 mg every two weeks. So as you can see I still have quite a ways to go on my tapering. I should be off at the end of April if all goes well.

Anyways... I noticed that I didn't get the puffy face or joint problems til around 30-20mg, and the moodiness was really bad from 40-20mg... but then from 15-10mg the acne came as well as hair loss (but this could be my imuran). Basically I gained most of my weight so far when I was on 40 mg because my appetite was still raging and 40mg is also when I received my eye problems. But once you get down to 10mg you don't necessarily feel like eating everything that moves so thats good.

I'm almost positive that this post was very confusing, so I'm sorry for that.

Oh and Kev... I know its kinda hard to tell whether the Pred is helping or not, but if you are able to tell then it must be helping you, so congratulations!
02-01-2007, 09:00 AM   #16
Kev
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Prednisone and me Day 8 Thanks katiesue, but hold off on the congratulations for a while. I eventually got to sleep last nite, but then was awakened just in time to deal with the big 'D'. It was a pretty close call. I don't think it is the pred at fault, think my CD is kicking things up a notch. all the improvement that I've seen over the past week has vanished.. It's funny how we associate things in our heads.. anytime someone mentioned a 'flare', I'd auto assume they meant those 1 - 3 day flares that I was accustomed to. now, as I enter month 3 of this flare, I'm starting to get the picture. I still got a lot to learn about this disease, but it seems more than willing to teach me..
02-01-2007, 12:57 PM   #17
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Ah Kev...
Not to worry...could be your dosage needs adjusting now.
Let your doc know if the D continues.
Prednisone is a great drug..I was on it for over a year.

Feel better...and keep us posted.

Nancy
02-02-2007, 01:39 PM   #18
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Prednisone and me, Day 9.. OK, I'm long winded at times, but pardon me if I go on a serious rant here. I just don't get it.. I don't like this damned disease one little bit.. Here's my update.. Late nite/early morning of Day 8 I had an episode of that ol spontaneous BIG 'D'. Almost had an accident in my bed, which I feel is one of the more disconcerting and disheartening aspects of this illness. Of all of the shaming, embarrassing aspects, this is one I really have a problem with. During Day 8, I lost all of the ground I had gained, and my warning signs of further deterioration were literally off of the scale. Pains were worse, my B/M was really bad, and I had repeated episodes of sudden, severe dry mouth.. which normally precedes a major flare up in the making. So I expected, with all of my prior experience with this illness, that Day 9 was a predictable write off - a bad day was coming, right? Wrong!! Day 9 I showed my most improvement ever! My B/M is the best its' been since last November and my pains are very low to moderate. I haven't experienced an noticeable bad collateral symptoms (i.e. the severe joint pain in my fingers, hips or toes)
or those monster killer headaches from taking the Salofalk I've had before. So why am I not elated? Simply because this illness isn't playing by the rules. I was expecting to be really suffering today.. all of the indicators told me I was going to be in bad/worse shape. Why & how is this illness pulling a 180 on me?
The absolute gall of it... How can I explain this turn around to my doctors on Tuesday without looking like a candidate for the looney bin? How can they predict or judge what to do next? Should my dosage go up, or taper off? Am I a typical case? Is there any such thing as a typical case in dealing with CD?
How does one maintain their sanity when dealing with such an insane illness?
OK, that's my rant. My symptoms are better, yet the disease has me feeling the worse for it.. Now, that's a pretty cute trick for a simple little organism.
02-02-2007, 02:07 PM   #19
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That's what is so damn maddening about this disease Kev.
You can't plan on what it's going to do next.
Don't worry about explaining it to the doctors..
they're used to hearing about the roller coaster ride Crohn's patients go through.
The only thing predictable is the pain.

I am pleased you are feeling better today.
Sending positive hugs your way~Nancy
02-02-2007, 02:14 PM   #20
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I remember still occasionally having some pretty nasty bouts with the crapper marathon while on Prednisone, but they did decrease a bit from my usual. One bout in particular, which I probably can't fault Prednisone for, made me realize what Dan Akroyd meant in Nothing But Trouble when he said Chevy Chase's character was worse that a week of the yellow sh*t storms. I kid you not, every 20 minutes or so for a week. I seriously considered sleeping on the bathroom floor. Again, I don't think it had anything to do with the Prednisone, but egads!

One of the little benifits I used to love about taking Prednisone, was that it always cleared up my Psoriasis (which seemed to show up shortly after I was diagnosed with Crohn's) while I was on it. That was something fun to have while in high school. Real nice when trying to find a job too...or a date. :/

Far as hair loss goes, mine's always been so thick that I kinda welcomed that aspect.

How does one maintain their sanity when dealing with such an insane illness?
Humor, insane amounts of humor...and poop jokes...oh, and fart jokes.
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02-02-2007, 03:29 PM   #21
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Hey Kev... yeah, like I said earlier, its so hard to tell whether you are doing better or worse on it... when I first started it, I was AMAZING... never felt better and I ate so much, but then a week later I almost passed out on the bathroom floor from the intense pains and I had the big D back. Since then its definitely been a rollercoaster... sometimes D, sometimes C... mostly D though.

I just have to warn you though... the periods of depression will come and you just gotta get through them... I was a firm believer that you can fix your outlook on life without antidepressants, and so thats what I did, but the moods swings can get really bad and you just have to find someone to talk it out with, and hopefully you have an understanding family... if not you can come here . For a while though the Prednisone made me giddy... and THAT was AWESOME.
02-03-2007, 07:43 PM   #22
Kev
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Prednisone & Me, Day 10.. OK. no new side-effects to report. What few I am experiencing are no better or worse than I've reported before. As for myself, I am feeling better than I was 2 days ago (the midst nite diarhea ordeal) but my symptoms are worse. So, I dunno if I'm regressing, or just experiencing a bout of the big 'D' that is un-related to my Crohns. Does that make any sense? Can someone with Crohns have diarhea that isn't related to their disease? Any opinions? Cause, otherwise I'm at a loss to explain feeling better yet be in worse shape vis a vis the ole big 'D'. Is it any wonder insanity seems sane by comparison?

Last edited by Kev; 02-03-2007 at 07:45 PM.
02-03-2007, 07:55 PM   #23
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Hi Kev,
Yes, you are making sense. I've had the flu with D & vomiting and just an awful all over feeling, and I thought it was Crohn's, and it ended up it had nothing to do with it. I suppose we can have other things wrong with us when we are having a bit of a time with the Crohn's too. Am I making sense??

Feel better.
02-03-2007, 08:02 PM   #24
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Absertutely, I've had unrelated diarrhea. I've had flu, food poisoning, anaerobic bacteria and other stuff that wasn't really a part of Crohn's, but gave me the raging runs anyway.
02-04-2007, 06:40 PM   #25
Kev
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Prednisone & me, Day 11.. Ok, experienced some very mild manic symptoms, but if I've got an unrelated bug of some kind which my pred & salofalk & crohns is masking, that could be the cause.. It's a funny feeling, like I was on speed or something... Urgent feeling to do something, anything, and ASAP or faster. ???
Otherwise, I feel alright. My B/M's are at the worse state that I've seen yet. It will make for an interesting meeting next Tuesday with the docs at the GI clinic.
02-04-2007, 09:03 PM   #26
Nancy Lee
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Feel better Kev.
Hang in there and keep us posted please.
Nancy
02-05-2007, 03:07 PM   #27
Kev
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Prednisone and me, Day 12 OK, human yoyo here again. I'm feeling better, and my B/M's are better. That manic sensation has passed, and I was able to go to sleep at a decent hour last nite. I dunno if any of this is helpful to anyone who is contemplating taking Prednisone for the first time or not. Writing it out on a day to day basis is a little offsetting for me personally at this stage, as it is a constant reminder of just how unpredictable Crohn's can be. This latest bout of my up till now reliable health indicators just going out the window on me is a little disconcerting. It's like up is now down and vice versa. I dunno how I can encapsulate all of what's happened to me in the last 2 weeks to my doc's on Tuesday. I can't give them an honest opinion of whether the pred is doing the trick, but realistically it may be too soon to say one way or the other. It all seemed so simple and self evident just last week.
02-05-2007, 05:07 PM   #28
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I remember Kev..
when I first started prednisone it was like, POW..it hit the Crohn's hard and I felt terrific.
Then as the time went by, I had my ups and downs and wondered if it was really working at all.
Your doctor will be able to tell though.
Be sure and let us know how you make out at your next appointment.
Hugs~Nancy
02-06-2007, 10:49 AM   #29
Kev
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Prednisone and me, Day 13. Getting ready to leave for my clinic visit. Anyone who is superstitious like me may wonder about the 13th... Oh, well. I feel p/g, and my symptoms and side effects are p/g too. On a scale of 1 -10,
I'd rate the side effects a 2, and the benefits (symptom reductions) a 4 - 5.
02-06-2007, 11:01 AM   #30
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Okay Kev...best of luck with the visit to the doc.
Let us know what transpires.
Nancy
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