Trouble tapering prednisone

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

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.

:)

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!!!

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.

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.

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.

:)

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

     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.

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!