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


 
02-22-2007, 09:49 AM   #61
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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!!!
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
02-23-2007, 01:09 PM   #62
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Prednisone & me, Taper day 1 Down to 35 mg.. So far, so good.
02-23-2007, 10:20 PM   #63
Maggie-Muffin
Senior Member
 
Join Date: Jan 2007
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
02-24-2007, 03:46 PM   #64
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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..
02-24-2007, 04:18 PM   #65
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
Okay Kev,
You take care...maybe in a day or so you will feel better.
Thanks for keeping us posted.
Hugs~Nancy
__________________
Diagnosed Crohn's & Colitis-January 1997.
Divertic.-2008

FaceBook- http://www.facebook.com/home.php#/pr...48&ref=profile

02-25-2007, 10:59 AM   #66
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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
02-25-2007, 03:48 PM   #67
katiesue1506
Senior Member
 
Join Date: Nov 2006
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.
02-26-2007, 09:42 AM   #68
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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..
02-26-2007, 09:46 AM   #69
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
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
02-26-2007, 04:20 PM   #70
Red Ahab
 
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.
02-26-2007, 10:11 PM   #71
Maggie-Muffin
Senior Member
 
Join Date: Jan 2007
Hope you feel better soon kevin
02-27-2007, 10:15 AM   #72
Brando
Senior Member
 
Join Date: Feb 2007
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.
03-02-2007, 03:42 PM   #73
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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...
03-05-2007, 08:43 PM   #74
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
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
03-06-2007, 09:53 AM   #75
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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..
03-06-2007, 11:59 AM   #76
Maggie-Muffin
Senior Member
 
Join Date: Jan 2007
Good luck Kevin,hope you get it
~~HUGS~~
03-06-2007, 01:25 PM   #77
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
Thanks for the update Kevin.
And good luck with the job offer!
03-07-2007, 01:39 PM   #78
robert.k
 
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.
03-09-2007, 06:58 PM   #79
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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..
03-09-2007, 07:41 PM   #80
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
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
03-09-2007, 10:49 PM   #81
robert.k
 
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.

Last edited by robert.k; 03-16-2007 at 10:36 PM.
03-15-2007, 01:46 PM   #82
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
Hey Kev!
Where are you???
Please post an update for us.
I'm getting worried.

Hugs~Nancy
03-16-2007, 06:57 PM   #83
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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.
03-16-2007, 10:52 PM   #84
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
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
03-23-2007, 07:51 PM   #85
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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..
03-23-2007, 08:58 PM   #86
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
Hi Kev!
I was getting concerned about you!
Wishing you luck in everything!!

Nancy
03-23-2007, 10:06 PM   #87
robert.k
 
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.
03-25-2007, 11:23 PM   #88
tinglebell
 
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.
03-26-2007, 08:03 AM   #89
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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.
03-26-2007, 12:18 PM   #90
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
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.

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

Get back to us whenever you can.

Hugs~Nancy
Reply

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


All times are GMT -5. The time now is 04:09 PM.
Copyright 2006-2017 Crohnsforum.com