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


 
02-06-2007, 03:33 PM   #31
Kev
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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.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
02-06-2007, 04:57 PM   #32
Nancy Lee
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I'm following you Kev...let us know how the 40mg dose goes!
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Diagnosed Crohn's & Colitis-January 1997.
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02-08-2007, 01:11 PM   #33
Kev
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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.
02-09-2007, 10:17 AM   #34
Kev
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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?)
02-09-2007, 10:44 AM   #35
TammySue62
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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, 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 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.
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
02-09-2007, 11:50 AM   #36
Nancy Lee
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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...
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
02-10-2007, 08:45 AM   #37
Kev
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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.
02-10-2007, 06:14 PM   #38
Nancy Lee
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Wonderful news Kev!
Keep up the good work....and keep us posted!
Hugs~Nancy
02-11-2007, 11:55 AM   #39
mikeyarmo
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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!
02-11-2007, 06:05 PM   #40
Kev
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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..
02-11-2007, 09:10 PM   #41
Nancy Lee
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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
02-13-2007, 02:27 PM   #42
Kev
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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
02-13-2007, 04:06 PM   #43
ruthymg
 
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
02-14-2007, 11:01 AM   #44
Kev
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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
02-14-2007, 01:20 PM   #45
Nancy Lee
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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
02-15-2007, 10:39 AM   #46
Kev
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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.
02-15-2007, 06:37 PM   #47
Nancy Lee
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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.
02-17-2007, 09:11 AM   #48
Kev
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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.
02-17-2007, 09:18 AM   #49
ruthymg
 
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
02-17-2007, 09:30 AM   #50
Nancy Lee
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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
02-18-2007, 08:47 AM   #51
Kev
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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
02-18-2007, 10:12 PM   #52
Nancy Lee
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Kev,
One thing you are NOT is "Stupid"!!
So get that out of your head..don't even say it in jest!
I don't know about the nosebleeds...can't help you there.
'Bout all I can say is...keep on keepin' on!
02-19-2007, 02:14 PM   #53
Kev
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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??
02-19-2007, 10:11 PM   #54
Nancy Lee
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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
02-20-2007, 09:29 AM   #55
Kev
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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?
02-20-2007, 02:22 PM   #56
katiesue1506
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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.
02-20-2007, 03:49 PM   #57
Nancy Lee
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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
02-20-2007, 04:26 PM   #58
ruthymg
 
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
02-21-2007, 10:22 AM   #59
Kev
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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)
02-21-2007, 11:34 AM   #60
Nancy Lee
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That's great news Kev!
And a 'good' BM for us Crohnies is something to grin about!
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!

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