Prednisone and me, a personal diary

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Kev

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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?
 
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?
 
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
 
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
 
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
 
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
 
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
 
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
 
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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.
 
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
 
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..
 
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! :smile:
 
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
 
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!:)
 
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..
 
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
Hugs.gif
 
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.
 
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
 
Prednisone

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?
Click to expand...
Humor, insane amounts of humor...and poop jokes...oh, and fart jokes. :D
 
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. :)
 
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?
 
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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?? :ybatty:

Feel better.
 
Yuppers

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.
 
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.
 
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.
 
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
 
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.
 
Prednisone & me.. a brief update. Doc's are upping my dosage to 40 mg a day, so I'm starting tomorrow... I'll pickup on the 4 week trial @ 40 mg from Day 1, 2nd edition. Confused? Don't sweat it, I am and I'm the one living & writing it.
 
Prednisone and me. OK, here we go again. Yesterday was my first day (Day 1) of me taking prednisone at 40 mg (after two weeks at 20 mg docs doubled the dose I'm on).. Maybe it was the 2 week lead up at 20 mg, but my 1st 24 hours were pretty tame. I THOUGHT I was completely side effect free, but last night I became ravenously hungry... which considering my restricted diet, is a nuisance but not a major issue. However, my belly wasn't rumbling, and the more I tossed it over in my mind, the more I realized I wasn't really hungry... just the drugs playing tricks on my mind. so i tuffed it out, but for a while there it was a real nuisance... You know, your brain is telling you to eat something, anything.. but you aren't really hungry so you don't know what to eat.. (or to do for that matter).. Has anyone else experienced this effect???

Anyway, on a bit of a side note.. The good folks at the GI clinic gave me their typically thorough going over (a polite way of saying they poked, probed and prodded me from stem to stern).. As a result, it appears my disease is now attacking from new directions.. Involvement of the terminal illeum (sp?) AND
jeujeunum (even worse sp?). Still some indication of liver involvement, but it is less than it was 2 weeks ago (thanks maybe to pred) and no current sign of lymph node (whatever those swollen things were, they've totally gone down)
involvement. My GI is back from maternity leave, and I'm seeing her shortly.
 
Prednisone and me.. Day 2 at 40 mg.. No noticeable side effects of any kind to report in the last 24.. No hunger/food cravings, no sleep disruption, nada!
Benefits I've noticed.. less abdominal cramping, less pain with eating & taking
meds, less gas, healthier looking stool, and noted improvement in odour of any
of the last two items.. (dog is no longer giving me that 'did you do that' look?)
 
prednisone Good Verses Evil

Hi Kev
THis will be the third time that I tried to attempt your story. Some how the other 2 posts got lost. Iwill try again.
This drug has its good points and bad points ( to me anyway)
The good it makes you more hungry you feel great,the big D starts to slow down big time,:lol: and it somewhat makes you feel kinda normal if you no what I mean.
The bad side for me is now that I have been on it for years My body will not let me stop taking this so called wonder drug.
My hair falls out, very bad brusing,now I have Ostephoris(sp?) for this pill Bones are very very brittle.Have to take vit.D and actonol once a week) If I fall DR. says im Liable to break bones mostly hip area now my lower back constantly hursts. i get dry skin or scorisis(sp?) bad muscle spasams (unbearable) joint and muscle aches Now im sounding like a whiner now :lol: but this all happens to me now. My right side of my face blew up like a ballon, that took a week to get back to normal, had water on the knee but I did not bang or hit my knee on anything even the Drs. were puzzeled on that one .
The list can go on and on but I wont bore you with more details. :lol:
Have you tried taken your 8 Tabs of prednisone in the morning that makes a big difference.Because its almost like an energy drug.Gives you a boost for the day. If you take it at night,well it would kinda feel like your hungry and lack of sleep causing restlessness.
But these symptons only happen if you have been on this drug for a long time in my experience.
Hope tthat answers some of your questions and try not to stay on prednisone for long periods (like years)

TAMMY:canada_flag:
 
Hi Kev! :)

Good to hear the prednisone has kicked in and doing it's job! YAY!
I had to smile when you wrote about 'healthier looking stool'..
only another Crohn's patient can fully understand and appreciate
how exciting it can be to have healthier looking and smelling stools!
That's a great sign!

As far as side effects, when I was on them for over a year..
yes I kind of got a face like a cabbage patch kid doll...:lol:
and my thick hair 'thinned', but when I stopped taking the drug
it came back in thicker and curlier than ever.

All in all the side effects seemed a small price to pay for the benefits I received.

My doctor asked me while I was on it to please wear a medic alert bracelet,
or on a chain around my neck saying I was on Steroids/Prednisone.
You can get them here in Canada at the corner drug store.
I still have mine in case I ever go on it again.
Just something for you to think about.

Great report Kev...keep us informed!
Hugs~Nancy
 
Prednisone and me, Day 3 at 40 mg. First, deep thanks for those who posted or sent private messages. I really appreciate the thoughts and words of both wisdom and encouragement. OK, as for me, side effects at 40 mg are really neglible.. but it is only day 3.. The benefits. WOW! Best I've felt in 3 months. This am's first trip to the bathroom was an absolute pleasure as only a person with Crohn's would/could describe. Almost a totally normal experience, thought I'd never see that occur again.
 
Kev,

I have been reading this diary with interest and enjoying it immensly! Thanks for sharing. As someone who has been on Prednisone at the same dosage as you (eventually I think my high was 40mg a day also) I know what it is like to have the weird side effects. I was on a liquid only diet while on prednisone, which was actually probably easier to deal with than a restrictive diet, as all I could do was drink even if I was hungry. Based on that, I would recommend dealing with hunger by drinking water or juice if possible. You can likely only drink so much before feeling bloated that you will limit yourself and your brains urging to eat will not even feel possible. It worked for me, so maybe give that a try.

As with sleep. I felt the best thing to do was not force anything. If I was having trouble sleeping, I would just wake up... even if it was only 1 hour after going to bed. I felt I got into a pattern of something like 1-2 bad nights of sleep (1-2 hours) followed by a FULL nights sleep (9+ hours). I would just accept it and would go with the flow so to speak. If you are awake and have tried to fall back asleep for 15-30 minutes, it is likely less frustrating to just get up and do some work. I used to study as I had exams, but any light paper work will probably be good to do.

Prednisone can also affect your mood/personality a bit, making you a bit more emotional on several fronts. First you may become more aggressive or quick to anger. At the other extreme you may become more sensitive also, and smaller actions or issues may seem to be more important to you. These things are harder to notice, and likely will be recognized by others before you realize it yourself. Just do your best to realize that this drug is affecting your body in some different ways, and may even make you start to think or act a bit differently with others. Let others know about this , and do your best to realize what feelings or thoughts are coming as a side effect of the drug.

Looking forward to further updates and good luck with the continued treatment! PM me if you have any questions, concerns or ANYTHING!
 
Prednisone and me.. Day 4 @ 40 mg.. OK, got off to a great start. Seemed it would be a repeat of the previous great day.. Then, mid afternoon, my next B/M was awful.. Tiny, malformed, and with extensive & very painful cramps. The cramping & pain continued thru the day.. no improvement in other B/M's. Yoyo effect. Unpredictable, inexplicable... more than a little disheartening. I mean, if I was on a downward spiral, or a slow upward curve, then it would be easier to cope.. to predict what's next.. to decide if I could or should go for a drive.. or take a trip to the grocery store.. or join a friend for decaf.. I don't feel or sense that my reaction to this is drug induced 'mood swings'. It feels to me to be perfectly natural to be a little upset by this roller coaster..
 
I can see how you would be depressed or upset Kev.
Please give it more time...wait and see if it levels off.
You haven't been on it that long.
Try to be patient and let the Prednisone do it's work. :)
Hugs~Nancy
 
Prednisone & me, Day 5.. Err, actually into day 6 now, but Day 5 was a total nitemare.. And I mean nitemare... Don't think it's the prednisone at fault. My story starts off with a big foulup on my part.. missed my second set of meds.
Not sure how I missed them.. have a pill calendar and everything.. But I seem to be extremely absentminded and forgetful of late.. Anyway, 6 hours AFTER I was supposed to take them, I realized (or my body started telling me) that I missed them.. so I popped them at around 10:30 pm, then waited till 1:30 AM
to take my next dose.. then I went to sleep.. That did not last long.. around 3:30 in the morning the nausea began, then heartburn, and strong acid reflux.
The acid came up the ol esophagus (sp?) then down the ol windpipe. Needless to say it was not only extremely unpleasant, but triggered coughing & choking that lasted over an hour, and some rather nasty sounding breathing noises that I had no control over.. Sounded like someone breathing their last breath.. The nausea, heartburn and reflux lasted till about 6 AM.. I tried to ignore it, but around 5 I gave in and self medicated on some prevacid.
OK, so call me the captain of the Titanic.. My ribs feel like back in the ol days
when i'd go too many rounds with a boxer who was a good body puncher. It's
probably just from all of the coughing.. And the nausea & acid reflux is likely due to my lack of diligence in taking my meds when I'm supposed to and with food like I'm supposed to.. At least that's what I'm hoping.. And not that my illness is spreading up from the jejunum and into the duodenum and stomach..
ANYWAY, despite a total of 1 1/2 hours sleep, I was up at 8:30 today and off
to a job interview & testing for a prospective employer in a teaching position.
Now, I know I looked like hell when I went there at 10:30, but I did alright in the interview process, and the testing went very well (but the score's not in yet), sooo, as long as they didn't take one look at this decrepit ole fart and say 'let's not break out the inkwells and slates on his account', then maybe I will get the job and have some income once again, maybe even some health coverage.. Cause the only thing that's lost more blood than me the last two years is my 'retirement' nestegg.. And hopefully I'll be able to put a stop to it
 
Sorry to hear you've had a rouygh couple of days Kev, you were doing so well too. Once things settle down, I'm sure you'll feel much better. I just wanted to comment on a couple of things, I too used to take 8 tabs of pred in the morning and none throughout the rest of the day, I found it worked better for me. I am sure thats how it recommends you take it on the leaflet too. If you have one handy, have a look. The other thing I wanted to say was, the pred is fantastic for upping your appetite, I had that result within about a week of taking it. Lets hope the good effects you have had so far remain and you don't have to stay on it too long. I was on it at my longets for 18months and like Nancy had problems with the shape of my face and facial hair and thinning of the hair on my head, all not nice, so fingers crossed that you can come off it soon.


Ruth
 
Prednisone and me, Day 7 @ 40 mg.. So, all in all now I've been on Prednisone for 3 weeks.. 2 weeks @ 20 mg, and this past week @ 40. As for side effects, I have to say any that I have encountered.. a little sleep disorder, appetite gain,
have been mild.. Benefits.. My body responded best during the first week.. The remaining improvement I've seen so far has been on again, and off again. I don't think it's a closed case.. meaning I'm not sure the Prednisone is failing to do the job.. I think I'm taking it in the midst of a major flareup or downturn in my health.. and that the Crohn's is winning in this initial stage.. Time will tell
 
Hi Kev,
I just wandered in to see how you are doing.
Just hang tough, keep up the fight, and Crohns will not win.
Nancy
Hugs.gif
 
Prednisone and me.. Day 8 @ 40 mg.. Pretty much status quo. Things about to change, and hopefully for the better. After 1 week at 40 mg, preceeded by 2 weeks at 20 mg, and pretty mild to moderate side effects to report, I've decided to make a major change.. I am trying to stop smoking. Look out all!!!

Anyway, thanks to everyone who popped in or sent private messages, and a very special T.Y. to Nancy Lee. Your thoughtfullness has not gone un-noted.
 
Hi Kev!
Congrats on deciding to quit smoking.
It's a difficult task at any time let alone when you have Crohn's and are on Prednisone.
Now you must keep us posted on that as well.
As far as the support from me or anyone else...
hey..that's what we're here for. :)
 
Prednisone and me.. Update.. Brief update.. NEVER, EVER, EVER try to QUIT smoking while taking Pred @ 40 mg.. Nicotine withdrawal I've done before. It isn't pretty.. I've never tried it while on Pred before. Putting this idea on hold
for a while.. As for the Crohns fight, seem to be making headway. side effects
are mild.. and I've noticed my winter dry skin is vanishing and my finger & toe
problems are greatly diminished. Not sure if that's the pred, or other changes.
 
Keep up the packing in smoking if you can Kev, you'll really notice the difference in your symptome. I'm sure you know all about how smoking can make crohns worse so I'll not go on about it. I used to smoke 20 a day before I got pregnant with my daughter in 2003 and had to give up when I bacame pregnant. I haven't touched one since. Think I have grown out of it after smoking for so many years, but I really noticed the difference when I gave up. I hope you can do it. Fingers crossed

Ruth
 
Hey Kev!
Good to hear the Prednisone is making headway!
Also the dry skin and the problem with your fingers and toes is diminishing.
That's fantastic news!
Not to worry about the quiting smoking...for the moment.
May be best to get a handle on the Crohn's first?

Hugs~Nancy
 
Prednisone & me, Day 10 @ 40 mg.. Again thanx all for the lovely comments.
Started off the day with migraine (unusual in the morning) and a nosebleed..
Not sure if that's the pred (haven't had any nosebleeds since the 1st week of starting pred.. ) or whether it was follow-up on the nicotine withdrawal. those
who don't know me or haven't heard my tales of woe on here before, a little background.. I am a smoker, but I have quit before. In fact, for 10 years. I started up again during my 2nd flareup, when it was initially mis-diagnosed as pancreatic cancer. I quit again, followed shortly thereafter (within 5 months) by my latest flare-up (now into my 3rd year of continuos symptoms, but now at least I've been correctly diagnosed). I resumed smoking when all efforts to stop/slow my bleeding failed.. some older/wiser IBD patients told me that 6 - 8 cigarettes a day slows the bleeding. But that's because it constricts the blood vessels.. not good for heart, circulation, lungs, blood pressure, etc. etc
Perversely, it also means that drugs taken to combat IBD, Crohn's, etc., arent'
as effective. So I know all too well that I (and any other Crohnie who smokes)
should quit. now that my GI is back, that's my next major goal in the battle..
Having said that, my moderate to mild side effects from the pred seem to get a little extreme when you factor in nicotine withdrawal.. It sort of like the old nicotine withdrawal on steroids. WAIT! It's not sort of like it, it's XACTLY like it.. It's nicotine withdrawal on steroids!!! Sometimes I'm just too STUPID!
OK, by Wednesday, I start to taper off the pred... By the end of the month I see my GI.. Somewhere in between I PLAN to stop smoking.. Heaven help me
 
Kev,
One thing you are NOT is "Stupid"!!
So get that out of your head..don't even say it in jest! :lol:
I don't know about the nosebleeds...can't help you there.
'Bout all I can say is...keep on keepin' on! :wink:
 
Prednisone and me, Day 11 @ 40 mg.. Side effects, none worth noting last 24
hours. Symptomology.. Middle of the nite the big 'D' hit spontaneously.. That aside, everything else A-OK. Not quite back to where I was last nov, but roughly est. at about 70%.. Was hoping for 100% by Wednesday coming, as that's when I start to taper.. Hey, maybe it just doesn't work that way??
 
Hello Kev..

Seems Crohn's has a mind of it's own,
and will calm down when it wants to eh?

Could be your body is not quite ready to taper on Wednesday.
And if that be the case, don't be disheartened. :)
Best to give it a try and if things worsen you can ask your doc
and pop back up to 40 again for a bit?
You know whith Crohn's we have to learn to go with the flow...so to speak.

I know whenever I had to taper it was sort of trial and error.
Until my body was ready and the Crohn's flare had levelled off
it just wouldn't allow me to taper.

Keep us posted.
Hugs~Nancy
 
Prednisone and me, Day 12 @ 40 mg Issues? Mild to moderate heartburn today
That aside, no other problems to report.. No discernable improvements to speak
of either. At this stage, wondering if 40 mg is the appropriate dosage for a guy my size.. 6' 3" @ 240 lbs.. But, that's a call only my doc can make, and I won't see her until the 1st week of March (which isn't that far off, considering). But it would have been nice to have had it preceed my scheduled taper down date. I don't relish the prospect of tapering down THEN
possibly ramping up again. Darned Crohn's symptoms are already too yo yo like. How about anyone else? Ever had to taper off/ramp up like old OTIS?
 
Hey Kev... yeah I was at 40 mg to start for a while and then they kicked it down to 30... well I thought I was done, but NOPE, I went to 60mg after that... then I kinda stuck around 40mg until I was about to start my tapering schedule and now I'm working at 5mg... but its taken since last November to get this far. Plus my schedule is set so slow that I don't get completely off until the last of April-- two weeks each at 4, 3, 2, and 1 mg.
 
Hello Kev..
I know I was up and down...trying to find a good level for me, as I tapered.
And I think when I finally tapered off completely
it was at two week intervals on each dose, like katiesue.
Perhaps you can try a couple of days on the taper, which is, I think tomorrow
and if symptoms worsen then jump back to the 40mg until you see your doc
and then tell her what happened and see what she says?

Keep us posted. :)
Hugs~Nancy
 
sorry this has nothing to do with steroids but isn't it weird how you percieve other people? I would never have thought you were 6ft 3 Kev, thats some height, no offence intended naturally, just didn't have you down for a tall guy.


Ruth
 
Prednisone & me, Day 13 @ 40 mg.. First, thanks again to everyone for the nice feedback. It really is a great help. Second, as for my height, sure that nobody thought you could pile "_ _ it" that high.. Actually, my oldest son is now taller than me, and I think he may even out grow my size 14 feet. But that only means he won't be borrowing my shoes. OK, so if you notice an upbeat spirit, its due to a 'good' B/M on day 13... and literally no side effects to report at all. (I don't think my upbeat spirit is a pred mood swing, me just happy to have a normal B/M - think that's something only other Crohnies can appreciate - whereas a doctor might mark it down to prednisone side effect)
 
That's great news Kev!
And a 'good' BM for us Crohnies is something to grin about!
wink.gif

In fact...I think I may have to do the happy dance....
I do it when I have a somewhat 'normal' BM.
Join me if you like!

p08.gif
 
Prednisone and me.. Day 14 @ 40 mg.. Alls well that ends well. No nasty old side effects to report at all.. I was up late last nite, but it wasn't sleeplessness... Went to a party, didn't get to sleep till well after 3:30 AM
(OK, so maybe not so smart for a person with CD, but you got to live too)...
And, Nancy Lee.. Thanks all the same, but I think I'll pass. something about baby in a diaper that my old male ego, under the current circumstances, just can't accept AT this point in time. Ahhh, the fragility of the old male ego!!!
 
Hello kevin, I have been following your diary along hopefully the presdone will do the trick for you.I want to thank you for taking the time to write it.It helps to hear about someone esle's daily life.I'm glad for you I haven't had a decent one in I can't even remember when.I smoke too and should quit too, but when you feel lousy you don;t want to tackle another problem.
thanks
 
Prednisone and me.. Taper Day 3.. If u r counting, u know I missed Day 2. In my defense, Day 2 (actually Nite 2) turned into a bit of a nitemare. Gas, pain off the chart.. worst pain I've felt in over a year. So bad I almost went to ER.
Don't think it's the pred.. Think I screwed up.. Without even thinking about it
I ate a small bag of potato chips (crisps to those from across the big pond). I can only offer the following excuse.. These were ultra low fat, low sodium and 'BAKED'.. Baked even shows up in the name, which I won't mention from a fear of corporate lawyers and litigation.. Aside from that little indulgence, I made no other changes in my diet or meds or routine. What could it hurt? At this stage, my insides feel like they want to be on my outsides, and I seem to have some leakage around my incision.. an incision that's now over 1 year old.
Fortunately, I see my GI in a weeks time.. at the latest. Sooner if I worsen..
 
Okay Kev,
You take care...maybe in a day or so you will feel better.
Thanks for keeping us posted.
Hugs~Nancy
 
Prednisone & me.. Taper Day 4.. S_ _ t happens. Now I've got a major cold, or at least copld like symptoms. Any other pred takers evr go thru this? Achooo
 
Hey Kev... yeah it's really weird, but some mornings I will wake up with some pretty bad cold symptoms (stuffy nose, messed up voice, coughing, sneezing, runny nose), but then the very next day I'm completely fine. It usually doesn't last long. I kind of think that my Vitamin C pills are a BIG help in this department, because my symptoms won't usually last too long.
 
Prednisone and me.. Still tapering.. Cold worsening.. Moving into my chest now.
Seeing my GI in 3 days.. Think i'll stop with the daily updates as this cold makes
any 'possible' side effects or issues from the tapering process suspect. I mean, how do you tell if my specific symptoms are from tapering or from the bad cold..
 
I know what you mean Kev.
It's hard to tell at times if symptoms are Crohn's related or not.
And a cold can make you feel miserable.
Feel better soon.

Hugs~Nancy
 
Hello. I'm new to the this forum (signed up today). After reading Kev's posts, I would like to comment on the prednisone. It happens to make me feel like a million bucks. I get good appetite (more appetite than what's good for me), a good attitude & just a sense of healthy well being. I don't mean some kind of high. I think it's just how I'm supposed to feel. And it looks like I won't be able to easily stop taking it, even with very gradual withdrawal steps. I've been taking it a long time so it's a good thing, like Kev says, that it's so cheap. There is still a price to be paid, though. I also have to take more og the stuff for a longer period (pretty much all the time) than when I was first diagnosed about 17 years ago. It's a powerful drug that screws around with the central hormone system. Every health professional of any kind that I have encountered seems to know of the possibility of effects from prednisone within their specialty.
So I love how it fixes me, but I'm afraid of what it might be doing to me otherwise. I thought it may be useful to see an endocrinologist & get the ol' hormones checked out (anybody know how to spell that?).
Sorry, I ran on longer than I meant to.
 
you probably have a cold as a result of the prednisone. prednisone afterall is an immunosuppressant. if you are still smoking stop if you can man. it only makes it worse.

hang in there and let your body get back on track.. might take some time but you will start to feel better. keep those doctors in check and get yourself checked out if you dont get to feeling better.
 
Prednisone and me.. Continuing to taper.. Currently at 30 mg 4 days till next decrease. Saw my GI yesterday.. 1st visit in the last 6 months. Brought her up to speed regarding the hi incidence of CD in my biological family. I'd assumed that it would erase any doubts re whether I've CD or UC, but the jury's still out. Seems even with 4 - 5 blood relatives having CD, mine may still be UC. Even in a case of identical twins with family history, one may develop CD, the other UC. It may be a moot point... Looks like I may be developing a fistula... too early to tell, even after an examination.. In any event, with my recent downturn, the family history, and whatever that fistula looking thingy is, the next steps for me are to continue with the taper, and to have a barium
x-ray AND sigmoidoscopic exam sometime in the next 2 - 3 weeks. Seems the
lack of bleeding during this most recent downturn isn't good news after all (again, I assumed lack of bleeding was a positive development - big WRONG!)
The lack of bleeding while apparently inflamed may indicate it is CD, not UC.
The killer cold is still battering me.. but with my immune system suppressed by the prednisone, I kind of expected that. In the meantime, all of the job interviews I've gone on in the past week have gained me absolutely NADA. I guess its' hard to convince someone to hire a fellow my age who lost his last job due to chronic illness WHEN things in that regard are still up in the air AND
I'm nearly incomprehensible with cough, cold and runny nose. Never rains but...
 
Hi Kev,
Haven't seen you add to this thread in a couple of days...
Maybe you can update us again?
Be well.
Hugs~Nancy
 
Prednisone and me... Continuing to taper.. Cold still hasn't left me (Day 9). I have noted that my dry skin, which had completely dissappeared while @ 40 mg is slowly returning.. My BM/s have stabilized and appear to be staying in the healthy category.. (knock on wood).. However, there's a good news & bad news to that... The stability indicates the inflamation is down, but that means that the sigmoidoscopic exam (a bit painful) and the barium x-ray (if it is the same procedure as the one I had 15 years ago, extremely painful) is a definite go sometime in the next few weeks (waiting on a call from hospital)..
On the side of good news, I did get a job offer.. Starts on Friday, but it is dependant upon me taking an entrance exam and getting my license.. Seems my college diploma from 30 odd years ago isn't enuff, so I'd better study up..
 
Just wanted to chime in here, I'm new to this board.

I was prescribed prednisone around august or september of last year when I was initially under investigation for my symptoms (I am currently awaiting two examinations this month, a small bowel follow through to be done this Friday and a colonoscopy to be done on Friday, March 23rd) and the prednisone was like a wonder drug for me.

At my worst, I was literally running to the bathroom about 40 or 50 times a day. I used prednisone at a dosage of about 6 x 5 mg per day for about 3-5 days, then 5 x 5 mg per day for about 3-5 days, then 4 x 5 mg per day for about 3 -5 days, and I graudally tapered off.

I can honestly say that prednisone got my extreme bloody diarrhea runs under control very quickly. Unfortunately, I'm currently experiencing a flare-up right now and the prednisone isn't working the same magic it did for me originally. I've been using prednisone right now for a little over a week with minimal progress. Also, I'm seeing more blood these days than I ever have before. Keep in mind I'm still very 'new' to this disease and I'm currently in a process of 'getting to know' how I live with Crohn's (I'm still now officially diagnosed with Crohn's, my story is in the 'Your Story' forum).

Lastly, I didn't experience much in regards to negative side effects due to using prednisone. I think it might have increased body/facial hair growth, with *slight* increases in acne on my shoulders. The worst side effect was the bloating. I had the moon face and it made me feel somewhat self conscious.

Kevin, I do want to thank you for keeping this journal/diary of yours. It's nice to find a forum with this degree of activity. Good luck in dealing with your health and remember to keep a positive outlook. I find stress and poor sleep habits to be related to flare-ups.
 
Prednisone and me.. Continuing the taper process.. but I think it's going to pot.
Or at least I've been going to the pottie... like 8 times yesterday since cutting down to 25 mg of pred the day before.. and my BM's are reverting back to the size of fingers.. Doesn't bode well.. My cold is easing off, but still not gone. It will be 13 days tomorrow.. Anyone else superstitious? Seeing my GI on the 20th
Still waiting to hear from the hospital on the sigmoidoscope & barium x-rays..
 
Hang in there Kev.
These set backs happen, even on prednisone.
Your doctor might have to bump the dosage back up again...and that's okay.
Glad your cold is getting better though.

Healing hugs~Nancy
 
Kev: I noticed myself, when I initially took prednisone to control my first flare-up, that there was a correlation between my dosage and the severity of my symptoms.

I was prescribed this dosing schedule:

Taking six prednisone per day (30 mg) for three days, then five prednisone (25 mg) for three days, then four prednisone (20 mg) for three days, then a maintenance dose of three prednisone (15 mg) for about two or three more weeks.

I remember that once I made the switch from 20 mg/day to 15 mg/day, my symptoms worsen.

All I'm really trying to say here is that I think (in my completely unprofessional opinions) you should use as much medecine as you need to get your inflammation under control. Chronic inflammation over time takes you further and further back and can cause serious damage that is hard to recover from. If I could go back in time to my first flare-up, I would have been a bit more aggressive with my prednisone administration and I would have used the medecine for longer to ensure a more thorough recovery.

Initially, I was of the frame of mind that I wanted to get OFF medication ASAP. Although I wish I could go back in time and chosen to have used prednisone for longer, to have allowed a more thorough healing of my inflamed colon (and possibly small bowel).

Hope that makes sense.
 
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Prednisone and me, the saga continues.. OK, folks, thanks to all who expressed concern over me and my whereabouts, health, etc.. Sorry I was offline so long
Thing is that I'm in the middle of some pretty extensive training to get that job.
The job situation is looking pretty promising, but I won't know till months end. On the health situation, I continue to taper, and as I do my heath deteriorates.
Now, it could be the pred taper, or it could be the long hours in my training.. I'll see what my GI thinks next Wed.
 
Thanks Kev for checking in!
I know I was beginning to worry.
Good luck on the job situation.

Could be the cutting back on prednisone is causing the health deterioration.
See what the doc has to say...you may need to be on them a wee bit longer.

Feel better and fingers crossed on the job,
Nancy
 
Prednisone and me.. Down to 15 mg a day.. I've had 5 good days & 2 bad this past week.. Seems the further down my pred goes, the more bad days I have.
However, sticking with the taper for now. My GI has told me to ramp up if my health deteriorates, but to try to stay on course otherwise. I'll see her again in 2 1/2 weeks time for my next follow up. As for the training, 2 weeks down and 1 to go.. Logged 120 hours so far (not used to 12 hr work day schedule yet).. Hoping the next week isn't as gruelling.. Wish me luck in everything..
 
Hi Kev thanks for keeping us up-to-date, it look like you're noticing a relationship between your dosage of prednisone and the relief you're getting from your symptoms. I noticed the same thing when i used prednisone, the first time.

I would have to say I agree with your gastroenterologist regarding dosing advice. if I understand you correctly, you're telling us that your doctor recommends that you increase your consumption of prednisone if your symptoms begin to worsen. I think that's a good idea. Use as much prednisone as necessary. Personally, I would err on the side of overconsumption rather than underconsumption. Heal yourself fully. Once you feel good, then begin to taper off.
 
Congrats on the job. I have just finished a tapering dose of prednisone. Started at 40 and went down every week til I was off. My sx of crohn's and arthritis came back, but I would have 2 or 3 bad days and then 3 or 4 good days after I got down to 10 mg. Now I am not a good pt. and I hate pills, so my GI wants me to have remicade. After reading this diary and the responses, I'm thinking I should go back and do a slower taper. Of course I gained almost 20 lbs., got the moonface, cold sx, and "buffalo hump". I thought my sore neck (arthritis) had caused my vertebra to get misaligned. I am on entecort ec right now, but it has not brought sx under control. I am all puffed up with gas from it. Also, I started a bunch of projects, painting, wallpapering etc while on pred. and now I have slowed to a crawl off of it. I also had sleep problems Kev, but took ambien when I needed it. One other thing, you mentioned your memory is bad. Mine was bad before from b12 def. but has gotten worse since pred. Don't know why. I don't think you should quit smoking right now, your body will undergo too much stress, wait until you get under control. Maybe cut down some, which you probably have now that you are working.
 
Prednisone and me.. OK, 3 bad days in a row, and I've ramped back up to 20 mg. I'll try that for a week, then if all is OK, will start to taper once again. As for the job, that's still in the future. Still have another week of training to get thru.. and the last two weeks were pretty rough. Have logged 120 hrs of training, still need another 40 to re-qualify for my license in this province. The gruelling training MAY be the cause of my issues during the pred tapering.
As for smoking, I discussed it with my GI. She's taken it completely off of my to do list for the present. Says we will contemplate that, using trans dermal patches, when I'm stable.. and that I'm definitely not to attempt it before then.. According to her, the scoop is that smoking hinders the healing process for those with CD, but it actually aids healing for those with UC. Since the jury is still out on whether mine is CD or UC, but at this stage seems to be just UC, then we'll follow along those lines until symptoms or the progression of the disease indicates otherwise. Problem is that one of the key indicators when the scarring of the colon is indeterminate is the blood loss typically associated with UC.. My blood loss is almost nil at this point, so it might indicate CD, or it just might be the benefit of the nicotine from smoking.. She has one other patient who was in a similar situation, and she got him stable and has weaned him off of smoking almost completely, down to 1 - 2 cigarettes a day. OK, so that's the 3rd doctor who has, even though
reluctantly, admitted there is a side effect of smoking that is beneficial in the treatment of some forms of IBD. It's bad for all, esp for those with CD, but it can be useful in alleviating the chronic blood loss of people suffering with UC.
 
Hi Kev!
It's so good to ready your updates again.
Sounds like your doctor is on the right path here...
and the key is to taper slowly...as things heal.
I have CD but had terrible blood loss...to the point of being transfused.
But I did read somewhere about UC and smoking being a benefit.
Although I wouldn't recommend it as a form of treatment. :ybatty:

Do you mind me asking what kind of work you are training for?

Get back to us whenever you can. :)

Hugs~Nancy
 
Let me jump in with something that happened to me recently...

I began experiencing another flare-up about 10 weeks ago, it started with more frequent bowel movements, but quickly degenrating to VERY requent and very bloody diarrhea. I reluctantly jumped back onto prednisone. As I've stated earlier, when I had my first ever attack prednisone was like a miracle drug: I probably had about and 80% improvement rate within 5 days, and I felt virtually 100% perfect in a little over a week. As I also stated earlier, when I began to taper down my dose, I started noticing a worsening of my symptoms when I got down to about 15-20 mg/day. That being said, my 'good' memories of prednisone prompted me to jump onto it once my CURRENT flare-up got so out-of-control I simply could not deal with it any longer. So I began taking 30 mg/day. After 2 weeks, I had NO improvement. Can you believe it? This drug was so wonderful (aside from the side-effects) the first time I used it less than a year ago, and here we are, in the same situation, and the drug isn't giving me ANY relief. So I just jumped off it. Bad idea. You DO need to taper off. I began experiencing extreme pain/cramping (something I had never experienced before) after I jumped off the prednisone. It was horrible. Just yesterday I began taking prednisone again, this time at 40 mg/day, I'm also taking 4.8 g (12 pills) of Asocol/day. As soon as I took my first prednisone I felt the relief from the pain beginning. Still, I have constant diarrhea and I'm often bleeding internally... but I'm gonna stay with this dosing schedule for at least 2 weeks to find relief. I'm also seeing my gastroenterologist this Thursday, March 29th.

Later.
 
Prednisone and me.. I would never advise anyone who isn't a smoker to start smoking to alleviate the bleeding.. I was off of tobacco and in a very bad way when I followed that advice.. Now I have IBD and a bad smoking habit. Having said that, trans dermal nicotine patches that are available without a prescription MAY help someone who is experiencing significant blood loss w/o the risk of becoming addicted to smoking. There are health concerns & side effects of the 'patch', esp problems with sleep disruption and extreme dreams.
However, the manufacturers of the patch provide details and toll free helplines
to users of their product. If someone was having significant bleeding problems
and was desparate to get the blood loss under control, then it might be worth trying a package of the patch.. Maybe the 7 mg.. Try it at 7, double up to 14 if 7 didn't work.. give it a few days, see if the blood loss decreases.
It isn't a long term solution, and I'm neither a doctor or an expert, but I know that the time I ended up in the ER due to blood loss, nothing the doctors did had any effect.. My room-mates who advised me to start smoking weren't Dr's either, but my blood loss dropped dramatically after 1 1/2 days smoking.

As for the course/work, I'm not at liberty to discuss it publically, and I don't want to either violate my NDA (Non Disclosure Agreement) or jinx my chances.
 
Prednisone and me.. OK, after 3 bad bouts/flare-ups in one week, I ramped up to 20 mg for a week. Today is my last day @ 20, resuming the taper tomorrow. Since going up to 20, no bouts or flares. However, yesterday, I did have a nose bleed.. No other side or ill effects to report. My sleep pattern is normal, I don't have the moon face syndrome, and my associated problems (joint pains, etc..) are gone or in limbo. Having said that, bear in mind my exposure to prednisone has been rather short term, only a few months in duration. Overall, my experience thus far has been extremely good
 
Prednisone and me. Ok, looks like for me 15 mg of pred is the threshold dosage.
I was symptom free the week I was on 20 mg, but tapering down to 15 mg has resulted in flares of my symptoms.. Definite increase in pain, gas and the big D.
Seeing my GI again in a weeks time, will continue to taper until told otherwise.
 
Hey Kev... I was just wondering if maybe you are having problems with Prednisone dosage because you are tapering too fast... I just know they kept me on 40mg for at least 2 months and a half, having been on 60 for a month before that. And then I started tapering, but only moved my doses every two weeks and down by only 5mg a time until i got to 5mg, and now I'm going down 1mg every two weeks. It just seems like you may be tapering too quickly, but maybe your Crohn's/UC isn't as bad as mine used to be. I dunno... just tryin to look out for ya. Good luck with the rest of your trek!
 
Hi Kev,
I was thinking the same thing as Katiesue.
I remember tapering a lot slower than you are.
If the symptoms worsen you could always call your doc and ask if you
should go back up a bit and see if the symptoms taper off.

Keep us posted.
Nancy
 
Prednisone and me.. Thanks all. This illustrates one of the many great points of this website. As a 1st timer to prednisone, it wouldn't have occured
to me that tapering slower might hold the answer. I'll run the idea by my GI next Tuesday. In the interim, I'll follow the taper process, as my supply of pred is getting low anyway.. I don't have enuff pills left to ramp up again at the moment... But it appears certain that my threshold dosage is about 20 mg
 
It's good to know where your comfortable dose is Kev.
And yes I would tell the doctor when you go next week.
She may want you on that dosage for awhile yet.

All the best
Nancy
 
Prednisone and me.. OK, I'm now down to 10 mg a day... since yesterday. Its too early to tell realistically, but I've not experienced a change in my BM's yet as I did previously. On that front, everything seems normal this time out.
My other symptoms have increased... I have more pain, more lethurgy, and I experience those after eating sudden naps.. no control over those at all. My face appears to be flushed all of the time.. some people think it makes me look tanned and rested.. just the opposite of the way I'm really feeling. Go figure.. Tomorrow I see my GI for my 3 week follow up. Keeping my fingers X'ed
 
Thanks for keeping us posted Kev.
Please let us know how you make out at your GI appointment tomorrow.

Fingers crossed, Nancy:)
 

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