Share Facebook
Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisolone Taper and Problems


 
12-08-2016, 08:31 AM   #1
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
Prednisolone Taper and Problems

Hi up to 6 weeks ago I was on 40 mg of pred , when I was released from hospital I was on 25 mg and was given no instructions on how to reduce it ,
after countless attempts to contact my surgeon I was finally told to reduce by 5mg every 5 days , so I was on

25mg for13 days
20mg for 5 days
15 mg for 5 days
10 mg for 5 days ,

all was good until i reached the 10mg , since then 5 days so far I have headache , joint pain , and a lot of muscular pain and fatigue ,
Has anyone else experienced this on tapering from pred ?

Im temped to up the dose to 15 again but I have an appointment with the surgeon on the 19th and I might just hold on until then .

the only pain relief im taking is paracetamol , i have oxy but I dont want to use than unless i really have to .
__________________
Diagnosed with colitis/crohns 30 years ago .
currently sporting a stoma called IGOR

emazole 40mg daily
12-08-2016, 08:41 AM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hi. Call your doctor and ask him about increasing it. I hope you feel better.
12-08-2016, 08:49 AM   #3
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
I was on 40mg the same as you initially but reduced by 5mg every 7 days. I suffered with every reduction for about 4 days and then things seemed to balance out just in time for me to drop it again and feel rubbish for a few days!

When I hit 25mg I felt so awful that I went back to my GP after the nurse advised I might be tapering too quickly.

She tested my thyroid just in case but said it's likely the steroids were affecting my hormones (hot flushes at 25!) but other than that not to up them and continue tapering off.

In hindsight I wish I'd called the IBD nurse because I never really thought the steroids had much chance to do their job and felt no better for taking them. I ended up on the liquid diet a few weeks later because my symptoms were back with a vengeance.

I honestly think that each week my symptoms were gradually returning with each drop but I'd only just been diagnosed and didn't know any better. I would give your doctor a quick call, they may be able to advise.
__________________
Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
12-08-2016, 10:38 AM   #4
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
Hi. Call your doctor and ask him about increasing it. I hope you feel better.
I would call him Ron but the guy is a great surgeon but he is really hard to get in contact with , and my gp does not want to contradict his instructions ,
I will be seeing him on the 19 th so I will wait it out until then ,
I might give it another few days at 10 mg before I drop to 5mg , that might help a bit .
12-10-2016, 06:29 AM   #5
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
I upped the dose to 15mg myself yesterday and will keep it at that for 7 days and i will go down by 1mg a week after that and see how I get on , I'm fed up with doctors not getting back to me so im going to do it "my way" .
12-10-2016, 06:32 AM   #6
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
I upped the dose to 15mg myself yesterday and will keep it at that for 7 days and i will go down by 1mg a week after that and see how I get on , I'm fed up with doctors not getting back to me so im going to do it "my way" .


Fair play to you, with hindsight I wish I'd done that myself so I know how it feels. The side effects of these drugs aren't pleasant anyway so I think it says a lot if we would rather up the dose ourselves!


12-10-2016, 06:37 AM   #7
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
Fair play to you, with hindsight I wish I'd done that myself so I know how it feels. The side effects of these drugs aren't pleasant anyway so I think it says a lot if we would rather up the dose ourselves!
the annoying thing is that apart from the pred withdrawals I'm doing really well
I have regained all the weight I lost , I'm back up to 12 stone and my stoma is perfect .
12-10-2016, 06:40 AM   #8
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
the annoying thing is that apart from the pred withdrawals I'm doing really well

I have regained all the weight I lost , I'm back up to 12 stone and my stoma is perfect .


I felt great the first two weeks and gaining weight, it was only with each drop that I suffered until eventually at 15mg I felt worse than I did before I went on them. I appreciate my GP didn't want to interfere but I couldn't wait as long as I knew it would take the hospital to get back to me so I put up and shut up. Let us know how you get on


12-10-2016, 11:59 PM   #9
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
I would call him Ron but the guy is a great surgeon but he is really hard to get in contact with , and my gp does not want to contradict his instructions ,
I will be seeing him on the 19 th so I will wait it out until then ,
I might give it another few days at 10 mg before I drop to 5mg , that might help a bit .
I had a terrible time tapering, I ended up getting 1 mg tabs and tapered just 1mg at a time, over long periods, like a week at least. Still was difficult.
12-11-2016, 07:11 AM   #10
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
I went back up to 15mg and I will stay at that until next week
I'm seeing the surgeon next Monday and I'll let him sort it out then .


01-02-2017, 07:53 AM   #11
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
missed the surgeons appointment due to a chest infection so im going to go down by 1mg at a time and see how it goes , im on 14mg for the last 5 days and all is good so far .
01-02-2017, 07:56 AM   #12
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Best to you, Tony

01-17-2017, 12:15 PM   #13
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
I'm down to 5 mg today going to stay at that for 5 days and go to 2.5 after that for another 5 ,
joints are aching a bit and have some tenderness in the skin of my legs ,like bruising but no bruises and my eyelids are sore ,
but apart from that im feeling good



01-25-2017, 07:58 AM   #14
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
down to 2.5 mg a day for the last 2 days and no major setbacks (YET) I might yet see the end of pred ☠️before long


01-25-2017, 08:14 AM   #15
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hope so, Tony.

02-06-2017, 09:22 AM   #16
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
Back up to 10mg had a bad reaction with my output (pure liquid and upset stomach) back on 10 and everything good
I'm going to try 1mg reduction after a week on 10 and see how I go ,
I HATE PREDNISONE


02-06-2017, 11:05 AM   #17
Mattie
Senior Member
 
Mattie's Avatar
 
Join Date: Jun 2013
Prednisolone is the work of the devil. I struggled to taper from an initial dose of 40mg. Got down to 20mg and symptoms returned. Then managed to reduce to. 10mg but symptoms returned. Eventually I got some 1mg tablets and tapered by 1mg per week which worked.
02-13-2017, 09:04 AM   #18
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
four days on 9mg and still ok


02-13-2017, 09:51 AM   #19
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
four days on 9mg and still ok
Great

02-14-2017, 04:43 PM   #20
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Tony, I feel for you, I'm in a similar boat. I've also been tapering down by 1 mg per week. I'm down to 6 mg pred now, but I've tried twice to taper to 5 mg, and both times I failed and had symptoms and had to go back up to 6 mg. It's frustrating to be so close yet so far! Like you said, I just want to be off the stuff already. Hopefully the end really is in sight for both of us! My next step is that I'm going to try to taper to 5.5 mg instead (my GI prescribed me some 1 mg tablets and some 2.5 mg tablets, so I'm going to combine those to get to 5.5). If I can't make that work then I don't know what I'll do! Good luck to you, hopefully the day will be soon when we can both say we're off of pred.
02-14-2017, 09:39 PM   #21
Hypocrohniac
 
Hypocrohniac's Avatar
 
Join Date: Feb 2017
Yes, I want to get off the steroid rollercoaster too! I can see my own cheeks in my peripheral vision, my mind is making plans that my body can't keep up with, and a little sleep wouldn't go astray.
I did practically beg for it though, as I was desperate for any relief, so it's my own fault. I tried to drop 10 (from 40) before Christmas, but my inflammatory markers tripled, so I had to go back up to 20. Tried 15, then 12.5, now back up to 15.
*Throws hands up in the air*
02-15-2017, 04:30 PM   #22
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Yes, my cheeks have become quite chubby too! I hate it, especially when people take photos of me. I think I'm smiling normally for a photo but then I look so odd in the photo because of my cheeks, ugh! My sister-in-law made some comment at xmas about my "face fullness" and I had to stop myself from saying something mean to her. I know it'll go away when I'm off of pred, but since I'm having a hard time getting off of pred, I'm getting impatient and frustrated! I want to be off the stuff and have my face go back to normal!
02-15-2017, 04:58 PM   #23
Hypocrohniac
 
Hypocrohniac's Avatar
 
Join Date: Feb 2017
I bought big hoop earrings to wear to a wedding (my only outing in a year!) to distract attention from my face, and They. Did. Not. Fit! They got caught in the fat rolls in my neck and there wasn't enough room between my ears and my shoulders. How can earrings not fit? Had to laugh. I've put them in my "non-steroid" wardrobe.

Tony & Cat - How are your tapers going? I have been following your stories closely (potentially stalkerishly) from afar.
02-15-2017, 05:24 PM   #24
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
My taper is at a temporary stand-still for the moment. I told my GI I'm staying at 6 mg for at least another week or two before I try again to taper. When I do try to taper, I'm going to go down to 5.5 mg. But I have yet to pick up the 2.5 mg tablets from the pharmacy and I'm in no rush to taper just yet, I need to recover more fully from my last taper fail first. Ugh.

I was initially so happy to get down to 6 mg, because previously I couldn't get below 10 mg without having a flare/taper fail. I had been begging my GI for months to put me on LDN, and he finally agreed, and once LDN started kicking in then I was able to get below 10 mg pred. So happy! But then it all came to a halt again when I tried tapering to 5 mg and failed at that, twice. I'm hoping 3rd try is the charm! I don't want to be stuck at 6 mg pred forever. So close and yet so far...

Oh gosh, I'm glad I haven't thought to try big hoop earrings! But I am wearing long dangly earrings today in an effort to draw the eye away from my face flab. I think it's working! They haven't gotten stuck in anything other than my hair so far, so I think it's a success.

Speaking of hair, has anyone else's hair been falling out (like, more than usual) while on pred? Mine has been falling out a lot, sometimes even in clumps, and it was never thick to begin with. It's always been fine and thin, and is much more thin nowadays, so that has been a big impetus for me to try to get off of pred. I don't have much hair left to lose before I start going noticeably bald! Part of me wants to just shave it off and start over fresh, but I don't think my face is cute enough (nor do I have enough confidence) to pull off a shaved head look. It takes a certain kind of woman to be able to rock that look and I don't think I'm it.

Back to the subject of the non-steroid wardrobe - I've gained a bunch of weight, too. Before this flare started (back in July 2016), my weight was at about 146 lbs. But a lot of it was muscle because I was a regular exerciser. I could fit into a size 6 pants back then. Then, I flared, and I lost 17 lbs in about a month, and dropped down to 129. I stayed at 129 for as long as I was on a liquid elemental diet, but of course once I could eat food, the steroids made me eat ALL the food. I gained all my weight back and then some, and of course it came back not as muscle but as fat. My waistline is noticeably thicker and jigglier now. The highest my weight has gotten was 153, I'm currently at 148. So although I'm only 2 lbs heavier than I was before the flare, my body composition is very different (much more fat and less muscle) so I've gone up a pants size, from a 6 to an 8, and in shirts I've gone from small to medium. I got depressed about that and ended up donating some of my smaller clothes and have been buying clothes in my new, larger size. If I do go back down to my previous size, the good news is that I can sew, so I can take things in and make them smaller. Yay? In the meantime I feel flabby. I had started exercising again once I started LDN, but then my two recent taper fails have kicked my butt and forced me back out of the gym again.
02-15-2017, 05:26 PM   #25
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Oh, and no worries about following me even if it's somewhat stalkerishly! I feel like if talking about my experience on the forum can help even one person even one tiny bit, then it's all good.
02-15-2017, 05:55 PM   #26
Hypocrohniac
 
Hypocrohniac's Avatar
 
Join Date: Feb 2017
Thanks for the stalker approval. I'm up to page 223 of the Undiagnosed Club thread - been reading it like a novel!
Yes, weight is a problem for me too. I have 2 teenage daughters, so I NEVER say the word fat, or comment on any body type. Having said that, when they aren't around, I whinge about it. My first gastro, who I called Dr Fat, actually told me that I would feel better with my Crohn's if I lost weight as "you are clearly obese" - I was 90kgs - granted that is too big for my 5ft 4 height - but really? Way to make a person want to end it all.
Sadly, my face has never really gone down, even with many months in between rounds of steroids. Nothing has ever actually gone down, even after almost a year of forced Gluten-Free (stupid Coeliac Disease). I want to punch people who miraculously shed kgs going gluten-free, even though they aren't Coeliac. Through my stalking, I do know about your mum's self-diagnoses, and the trouble you have convincing her that neither of you are in fact Coeliac.
I haven't noticed too much hair loss, but I have massive hair, and used to have it thinned at the hairdresser, so I don't think I'd mind. I'm too chicken to shave my head too - imagine how big I would look bald!
Re distraction techniques: I wear eye make up when I have a coldsore outbreak, and wear clothes that expose as much cleavage as possible (ridiculously enormous, steroid enhanced boobs). That works well.
02-15-2017, 06:15 PM   #27
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Clothing-wise, I just try to wear looser clothes that disguise the steroid belly, I haven't found many other good techniques besides that. I've had multiple rounds of steroids as well, so my belly hasn't been flat in years. I first got sick in Oct 2009, was put on Entocort in 2010, and since then I've had at least some belly flab. I've been on Entocort at least 3 times, I did a couple trials of pred prior to this long course of it, and for at least a year I was on steroid suppositories to try to get my massively bleeding hemorrhoids under control. Fun times (not!). So yeah, for almost 7 years now I've had some belly flab, but never as much as I have now. This is definitely the worst it's ever been, so I've been struggling a bit with how to dress myself in a way that is flattering and minimizes how gross I feel about my current body.

I don't think my boobs have grown at all! My butt has, though. It's always been a bit too large for my frame anyway, but at least when I am exercising regularly then it's nice and round and a cute shape. Me not exercising for a large chunk of this flare, my butt musculature has sort of deflated - it's flattened out and widened a bit, it's seriously not cute. I need to get back to the gym!

Yeah, my mother definitely has some issues! I'm sorry to hear that you do have Celiac. I have tried gluten-free and it didn't make any difference at all for me - if anything, it made me a bit worse. A lot of GF replacement type foods contain corn, which seems to bother me a bit. And some GF foods contain coconut flour - I cannot do coconut at all, even small bits will make me ill sometimes for days. It's almost like an allergy, the last time I accidentally had coconut, I started sweating and shaking and got so nauseous and it lasted for about 4 days. So I do much better when I eat gluten, as it doesn't upset me like corn and certainly not like coconut!

What I really need to do is to stick to a Japanese-style diet. When I went to Japan last year, that was the best I've felt in ages. I walked around a ton and I ate a lot, and I felt so good. I need to just eat a lot of fish and rice mainly and walk more. I do well when I stick to that.

I have at least one "in real life" friend who has Celiac, and she's definitely gained weight from having to eat gluten-free, so you're not alone there. My mother hasn't gained weight, but she mainly just eats salads and also she runs marathons, so she's very thin!
03-02-2017, 07:12 AM   #28
Tony H
Senior Member
 
Tony H's Avatar
 
Join Date: Dec 2012
Location: Cobh, Ireland
Down to 5mg today and no big problems so far ,with a bit of luck I should be off this poison by the end of the month .


03-02-2017, 07:19 AM   #29
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hoping the best for you.

03-02-2017, 07:22 AM   #30
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hope so, Tony.
Reply

Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisolone Taper and Problems
Thread Tools


All times are GMT -5. The time now is 05:06 PM.
Copyright 2006-2017 Crohnsforum.com