Trouble tapering prednisone

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 4/9/2009 8:04 PM (GMT -6)   
Hi,
I have been taking 40 mg prednisone for 2 weeks, got much better and then started to taper 5mg a week. I am now taking 30 mg and my symptoms are back (blood , mucus, diarrhea, fatigue, etc)
 
I saw my doctor and I will retry with 40 mg tomorrow but now I am worried I will never get off prednisone!!!
 
What are your experiences tapering this medication?
 
Thanks


Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/9/2009 9:13 PM (GMT -6)   
Well, I got down to 20 mg. from 40 mg. and two weeks into 20 mg. symptoms returned, especially bleeding.  Now on 25 mg. and uppsed the 6 MP to 75 mg.  Hoping I can go back to 20 mg. soon with no symptoms.  It is like a roller coaster and no fun!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/9/2009 10:02 PM (GMT -6)   
Pred is pretty famous for that, it's really meant to be a booster drug (help relieve symptoms while maintenance meds are kicking in ) or as a short term relief which is pretty much what it offers...most everyone notices symptoms comming back soon after tapering because the lower you go the less effect it has towards your symptoms.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


UC Sucks
Regular Member


Date Joined Sep 2008
Total Posts : 23
   Posted 4/10/2009 1:05 AM (GMT -6)   
Im in the same boat. Was on 40 doing good, then I tapered very slowly to 30 mgs and the blood returned within a few days time. It sucks, and this is my 4th or 5th cycle of pred so I should be used to this but Im more frustrated than ever!!

I have nothing insightful to say...just feel your pain.
29 year old female
Diagnosed with UC 2005
Full Time RN

Current regimen: Mid flare... :-(

Lialda 2 pills/day -Remicade 10mg/kg every 6 weeks, Canasa at bedtime, Prednisone 40 mg, and Prilosec 20 mg only during Prednisone tapers.

Used in past: Sulfasalazine, 6MP, Asacol and of course Prednisone for severe flares


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 4/10/2009 8:56 AM (GMT -6)   
Thankyou everyone

I will ask my doctor about tapering very slowly, for now I will ben on 40 mg for at least 2 weeks (doctor is on vacation I will see him on the 24th).

I am worried about the irreversible side effects of this medication... It can totally mess with our system... I hope I won't be on it for years...

This morning I took 40 mg and already feel better though.. Not going to the bathrooom every 20 mintes feels so good!!!
Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/10/2009 9:44 AM (GMT -6)   

The wisdom of my 68 years tells me that prednisone is so good and so bad.  I do believe we should exhaust other options especially if young because of long term effects.  However, in the short term (I think about 3 or 4 months) we are not doing as much harm as the UC is untreated.  I do not want to lose my colon and therefore, after trying all mesalamines, etc. I had to give it a try.  It is working!  Just hoping the 6 MP kicks in in a month or so and I can taper the prednisone further.  My GI said I would have to taper to the point where symptoms were significantly reduced - no bleeding, D, cramping, etc. and stay there until the 6MP is working.  We all are different so sometimes we have to try different treatments.  I am so sensitive to medication that I told my doctor - think of me as a little kid and treat me with medication like he would a 100 lb. kid.  Works for me!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/10/2009 10:11 AM (GMT -6)   
PSA.Delhi, I disagree that everyone should be on a high dose of pred for four weeks. I was only on 40mg for five days, then I went to 30 for 5 days, 20 for five days, 15 for five days, then to 10, which is where I've been for six days now. I see my doctor this afternoon, and fully expect for him to have me drop to 5. It's worked wonderfully for me; I've had no symptoms return thus far.

Due to the damage that pred can do, even if you're only on it for a short time, I feel it's wise to at least try to taper fairly quickly, and if it works, great, and if not, then taper more slowly.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 4/10/2009 11:29 AM (GMT -6)   
my recent experience has been similar to fruitgirls. i was on 40 for 4 days, 20 for 11 days and have been on 10 for 2 days with no symptoms returning. in fact, my GI wanted me to just drop right off after the 20 but i have choosen to taper for a few days myself just to be sure i dont go backwards. i think that every flare and every person reacts differently to meds. psa delhi, like you i have been diagnosed for a number of years - 10 years -and i do think it is hard to make broad statements about this disease - so pink paperclip, have hope that your next taper will be the one that works for you. jo

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/10/2009 11:38 AM (GMT -6)   
Yes, but it CAN be controlled with one week (or less, in my case) at a high dose for some people, so why not try that first? If I had followed your advice, I'd still be on a 40mg dose, and risking the serious side effects that pred can cause. And my symptoms quite severe when I started on pred...approximately 10-15 extremely urgent episodes of D each day and very little energy. I agree with you 100% that sometimes it takes longer at a higher dose, but I really don't see the harm in trying to taper quickly, then bumping back up to a higher dose if it turns out to be necessary. I had fully planned to increase my dose (per my doctor's advice) if I started having symptoms again after I started to taper. My doctor also said that we would learn a lot about how I respond to pred with this first course of it, and that if I have to go on pred again in the future, that we'll use this course of treatment as a guide for how to treat me next time (of course, I'm hoping there isn't a next time!). I do realize that as the disease progresses, I may have to be on pred for longer periods of time. However, because of the serious side effects pred can have, I would rather move on to other treatment options than be on pred for longer than four months at a time. My GI (and my sister, who is also an MD), both agree with me on this thought.

I wasn't telling PinkPaperclip she should try to taper like I did. That clearly won't work for her. But the way your post was written seemed to suggest that everyone should be on a high dose for a long time.

I am very new to this disease, but I have done an incredible amount of research and reading and have had several long discussions with my GI regarding treatment options. I am of the belief that it's best to be as educated as possible about my disease so that I can be as proactive as possible in treating it.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/10/2009 9:05 PM (GMT -6)   
Hi Fruitgirl and Joma

I am sorry if my post has offended your sentiments, which I withdraw. Well my only advice is that the steroids have to be tapered off very carefully as per medical advice, in view of the side effects caused because of their abrupt stoppage or taper to lower level.

Cheers and have a nice weekend.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/10/2009 11:47 PM (GMT -6)   
I've had 4 different GI's in my 18 yrs of dealing with IBD and the standard with all 4 of my GI's is 40mg for 2 weeks straight then tappering 5mg for each week (not 5 days) after that until getting down to taking 3 pills a day then going to 2.5 then 2, ect for each week until completely weaned off (nice and slow).

Fruitgirl, you're experiance with IBD is aprox 5 months (not very long compared to many on here), tappering too quickly can be harmful (you need to do more research before making suggestions like that to anyone when it comes to pred), the point of being on a high dose like 40 mg for at least 2 weeks is so pred can work it's magic and why your doc only has you on doses for 5 days at a time is beyond me and honestly the weirdest thing I've heard when it comes to taking pred to treat IBD, obviously he's trying to tapper you off quickly and if he knows anything about pred then he'd know that it's for the most part pointless to put a patient on pred with that kind of bizzare scheduling. And as far as the side effects of pred go, there are short term side effects that will go away completely once the pred is out of your system and there are long term side effects (permanant damage) that it can do which generally happens to those that remain on pred for a long time (more than 6 or so months) and who continue to use pred frequently and for a long time...you should also know that people can either become pred dependant from being on it too long and too often or they can also become immune to pred (when taking it will no longer have any effect for symptoms). It's also more common than not that once you tapper down to a certain amount that symptoms will return because as you may or may not know, pred is known as a bandaid med.  Milder cases may require pred to be used differently but if that's the case no good doc would put a mild case on pred.  Of course different GI's may have different approaches but that doesn't make one better necessarily over the other either.

You may feel you are more than educated when it comes to IBD but if so then you'd know everyone is different and that should be respected....your way (or your GI's way) is not the norm from my 18 yrs of experiance with 4 different GI's and I'll let you in on a little secret, hanging off every word your GI tells you is about the biggest mistake anyone can make (which is why I've gone through 4 of them myself), there are great GI's, good ones and ones that aren't worth a penny. With time and experiance you'll figure that out.

It's one thing to offer advice, it's another to force it.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 4/10/2009 11:01:36 PM (GMT-6)


JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 4/11/2009 6:24 AM (GMT -6)   
The last two times I've tried to taper from 40mg to 35mg and immediately started to have problems. Blood, mucus returned....

A week ago I did my third Remicade treatments and also tapered from 50mg to 40mg. Things "seem" ok for the time being. I'm hoping I can taper off this time as the pred is starting to piss me off.

I'm hoping the Remicade is finally starting to work and prednisone won't be a issue anymore.
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/11/2009 8:49 AM (GMT -6)   

To about all the above....

Does it not show you how different we are and how different doctors are taught/think/experience?  I am afraid because I did not go to medical school I don't have a choice but at least try what my GI doc recommends.  You know years ago when we did not have computers, etc. etc. we always had to rely on our doctors to do what is best for us and follow their instructions carefully - right or wrong for us.  Took me about 40 years to realize I have a kids body in here to treat - I Need only kid doses, etc.  I have finally convinced my NP/doc of that.  I have followed my GI doc's schedule (by the way he has 25 years experience) with tapering prednisone and letting him know if it stops working or I seem to be going in reverse.  At 20 mg. for two weeks I started seeing blood again so was advised to increase to 25 mg.   Anyway, because of my age I am not really concerned about long term affects.  My doctor said I should mostly worry about painful hip disease (forgot the name) and that prednisone will stop working.

By the way, I am considered a "mild" case which would not be normally treated with prednisone but ran out of options!  I, too, believe the mesalamines are the best/safest in long run if you can tolerate them including rectal meds - could not find any I could use. This discussion could go on forever but I hope everyone gets the relief they need.  AND - a cure in my grandchildren's lifetime would be wonderful!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/11/2009 10:03 AM (GMT -6)   
pb4, if you'd read my posts, you'd realize that I'm not forcing anything on anyone. I'm just sharing what worked for me. I just felt the need to point out to PSA.Delhi that being on a high dose of pred for 4 weeks (he deleted the post where he stated that, and I think one other, so it makes my posts now seem like I'm a crazy person) was not necessary in my case, and if I'd followed that advice, I'd still be on 40 mg instead of the low dose I'm now on. My "why not try that first" maybe seemed forceful, but I was more thinking for MY case. My doctor is really reluctant to prescribe pred in the first place and does not allow patients to be on it for any longer than three months at a time due to the risk of long-term side effects. He moves on to other meds if he's got a patient who can't get off the pred.

Maybe what my doctor is doing is unconventional, but it's clearly working for me, and maybe it will work for others as well. I'm sure he knows plenty about pred, so please don't suggest that he doesn't. The longer you're on a high dose, the more slowly you have to taper because the adrenal glands are more suppressed (it apparently takes a week for them to quit producing cortisol completley), so that's probably why it was safe for me to drop by 10mg at a time and to do so as quickly as I did. I have had NO bad side effects from this schedule. I have also shared the schedule with my sister, who is an MD. She's not a GI, but she certainly fully understands prednisone and how it can be used, and thought the schedule my doctor put me on was fine.

I do know that pred is just used to get inflammation under control and does not work to keep one in remission. It's just used to get a patient out of a flare and is not used as a maintenance med because it's not effective for that use. I learned that within the first week I had UC.

I also know that some docs aren't worth a crap. That's part of the reason I'm doing so much research...so that I have a better chance of knowing if that's the case and can find a new one if I need to.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/11/2009 10:15 AM (GMT -6)   
     I tend to agree with fruitgirl on this topic.  My GI doctor hates to put me on prednisone too.  Over the years I find that every time I suffer a flare it takes me longer to achieve remission and the dose of prednisone at which I start is higher.  My doctor calls prednisone the worse/best drug.  I lost a dear friend three years ago who suffered from Crohn's Disease.  She developed Crohn's back in 84 (before I even knew what it was).  The doctors had her on prednisone for a very long time.  She took herself off it without tapering and developed Addison's Disease.  I don't know what treatment she was receiving for this but the myriad of meds she was on eventually killed her.  Her bones were extremely brittle.  She started complaining of back pain and the next week she was gone.  Here, a small fragment of her hip bone broke off and lodged in her back.  She developed sepsis and that was that.  Very tragic and I miss her dearly.  She was only 58 yrs young.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 4/11/2009 10:25 AM (GMT -6)   
Many, many doctors suggest exactly what fruitgirl suggests.  I even had one doctor who want to try a three-day pred "shock" of very high doses quickly tapered.  If anything, doctors are repeating what they've been trained to do, which is work within a specific paradigm. 

Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 4/11/2009 11:03 AM (GMT -6)   
Yes, I agree in some cases - some, not all - pred can be tapered quickly. Short and hopefully sweet is possible. It is due to the fact that the adrenal glands are further suppressed the longer you are on pred and the higher the doses. I too have been though several GIs in my UC history and depending o the context of a flare they will approach taperig differently. There are numerous factors that will contribute to this decision - for example, I am currently breastfeeding and so my doc and I have agreed that a quick 'pulse' of steriods is our first choice to try for remission. I would think the goal for all of us is to be off pred ASAP and so if it is working for fruitgirl to do it quickly then that is wonderful. Others may do it differently because of their own personal history. But the fact is, you can taper quickly at times.

Also Pb4, it may not be true that a milder case would not be put on pred. My UC has been diagnosed as mild/moderate however, I have had times where it has not responded to the mesalamine drugs and steriods have been the thing that has worked.

Really, the one trait we all share as UCers is that our diseases courses are tailored made for us!
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 2:45 AM (GMT -6)
There are a total of 3,004,993 posts in 329,185 threads.
View Active Threads


Who's Online
This forum has 161757 registered members. Please welcome our newest member, Jamalsweet.
239 Guest(s), 5 Registered Member(s) are currently online.  Details
Sarge 83, Gemlin, auzzie, Jemyl, mufjem