How bad is prednisone and for how long?

I’ve been on prednisone for up to 8 months (maybe more). My original dose at age 19 in 1985 (first flare) was about 20 mg (?) and now 80 mg does not fix my flare but I had success with it for many flares. I have always had more positive benefits from prednisone than negative. It heals, I get more energy, my skin gets color back in it so I look healthier and my appetite returns. At moderate doses I do not get moon face or many of the other negatives others complain about. I do get bothersome effects though over 60 mg now but I don’t really rely on those doses to attain remission anymore. I understand the negatives I don’t see but I’m glad I was put on it. Nothing else heals me and, for me, my quality of life is better with it. Without immune suppressants or immune modulators like steroids, Imuran and Remicade I would have lost my colon a long time ago. At best, without these drugs I would not be able to work, run errands; go to the kid’s school and other social events and vacation. I would probably not have met my wife or gotten married; I would be house bound, taking supplements and anti-inflammatories and trying to deal with the continuous flare conditions. I go into remission for 2-5 years at a time and enjoy a normal life because of these drugs. My flares are wicked but last about 6 months with about 1-3 months of that being severe. My bone density is great and my yearly physicals with blood and urine analyses show I am in great shape. All my results show I am very healthy despite taking prednisone off and on since first diagnosed. I do exercise a lot though.

     Hi potato...lol..funny name.  I am 63 yrs old and was diagnosed with ulcerative colitis (actually it is proctitis as it hasn't traveled further into my colon as of yet), in 1998 at the ripe old age of 52.  At the time, I was extremely ill and thought I had cancer as my paternal grandmother died from rectal cancer at the age of 65.  To my great relief, I did not have cancer but UC and was hospitalized at that time for eight days.  They placed me on prednisone and Asacol.  I was on that regimen for about three months and then achieved remission.  Not knowing much about this disease, I thought I was "cured" and stopped taking the meds.  I was tapered off the prednisone by the end of the second month.  Two years later I suffered another flare and placed back on prednisone along with Colazal instead of Asacol as Colazal is supposed to better treat the lower portion of the colon.  Well, I did the same thing, stopped the meds after achieving remission.  Another two years went by and wham...another flare.  Only this time the doctor read me the riot act.  Back on prednisone, Colazal AND 6MP as I was having a hard time tapering off the prednisone.   The 6MP really didn't keep me from flaring.  I was able to taper off the prednisone again after about three months though.

     Long story, trying to keep it from getting longer.....since May of 08, I have been on prednisone about 13 months total...on and off.  Seemed like when I tapered off, I suffered a flare within a month or two and had to go back on it.  The doctor started me on Remicade in November.  At the time I was on 5 mgm of prednisone and tapering slowly.  After the first two infusions I felt great.  Two days after the 3rd infusion (by this time I was off prednisone), on Dec 31st (date of infusion), I suffered nausea, diarrhea, chills, body aches and a temp of 101 which only lasted 24 hrs.   Then I started back with a flare and last Friday the doctor put me back on the prednisone .  He told me to start at 40 mgm and the next day go down to 20 mgm for 5 days, 10 mgm for 5 days, 5 mgm , etc.  Hopefully, this was not an adverse effect from Remicade but we won't know that till after my next infusion on the 26th of Feb.

     Now to answer your question about what prednisone has done to me.....I have full blown osteoporosis, high blood pressure and when I am on the prednisone, high blood glucose levels.  The doctor said the list of bad side effects from prednisone far outweigh the risks of Remicade....but, that is the ONLY drug which helps me into remission.

     Sorry this is sooooo lengthy.

Burli, did your doctor increase your dosage of prednisone during your flares as time went by because you didn't respond to the lower doses?  Or did s/he start out with those higher doses?

Christine, that wasn't too long!  It's the kind of info I'm thinking about.  (I called myself potato because that was all I was eating at the time I signed on here, lol!) 

songlady, have you been on pred since that first 2 years? 

I want to say that when I was on 40 mg in Sept. (I went a quick taper), I felt horrible until I got to 20 mg.  It seemed to help, cutting D from 8-10 to maybe 4-5 times a day, but I went into a major flare about 3 weeks after the taper was over. 

 

I seem to be doing well, 4 - 5 times a day right now at the pred dose of 5 mg or less a day.  I don't have moon face and I lost 20 pounds during the Oct flare and I haven't gained them back.  I almost feel like I'm getting the opposite side effects from pred.  My BP is good, no diabetes, and I'm exercising 5 days a week, a little yoga daily, etc. 

Frankly, I'm also considering my age, since I'm almost 60, and wondering whether going on to Remicade makes sense for me.  I'm even wondering whether asacol has really been helping.  I questioning just about everything, and wondering if I would be better off following an old time med regime as so many of you have since you've had UC when you were young.    

 

Prednisone (and cortisone enemas) seem to be the only things that have REALLY worked for me, just the awful side effects at the high doses.      

Even though I haven't been on pred long-term, I've pretty much already made up my mind that I'll move on to remicade before I let myself be on pred long-term. I know everyone makes different choices, but that's mine! Also, even though you can deal with 4-5 BMs/day, remember that you're still probably inflammed. The idea of constant inflammation, even low-grade, scares me, because I think that your risk of colon cancer goes up the longer you're inflammed for.

However, why do you try upping the Asacol to 12 pills/day, or maybe try Lialda or Apriso? Maybe a different mesalamine will work better...you never know! Do you see Asacol pills in the toilet ever?

Anyway, good luck...I hope you finally get into remission, whatever you choose to do!

fruitgirl said...
Even though I haven't been on pred long-term, I've pretty much already made up my mind that I'll move on to remicade before I let myself be on pred long-term. I know everyone makes different choices, but that's mine! Also, even though you can deal with 4-5 BMs/day, remember that you're still probably inflammed. The idea of constant inflammation, even low-grade, scares me, because I think that your risk of colon cancer goes up the longer you're inflammed for.

However, why do you try upping the Asacol to 12 pills/day, or maybe try Lialda or Apriso? Maybe a different mesalamine will work better...you never know! Do you see Asacol pills in the toilet ever?

Anyway, good luck...I hope you finally get into remission, whatever you choose to do!

Inflammation and the colon cancer risk is worth thinking about.  I also suspect that I might be pred dependent already... on the 2.5 days, I see a little blood so I know I still have inflammation.  Since I have Kaiser, only Asacol and Colazol are covered.  I was trying the Colazol before the big flare in Oct., so went back to Asacol.

I don't know why we haven't upped the Asacol, and yep, I do frequently see Asacol pills.   But I've checked them, and usually they've opened, but some med may still be inside.

Since I've gotten worse in the last 2 years, it's hard for me to think Asacol has helped.  In a way, this goes back to Burli's thread about prescription meds and sticking with them vs. alternative meds.  That thread really got me thinking about all this and wondering if the whole "new regime" of meds that have come out since 1998 or so are right for me.      

I was diagnosed at the age of 27 while pregnant with my last child. I was put on prednisone and Asacol then and went into remission about 1 year later. That lasted four years almost. Since last Jan. I have been in a flare and on Pred anywhere from 20-80mg. I got really bad last fall and was hospitalized in Nov on high dose steroids by IV. I changed Dr's at that point and have been tapering the pred since. I have had weight gain, moon face, mood swings, and in the past two months they think I have developed Osteoarthritis in my shoulder which has been very painful.  I am currently on 10mg of pred and still tapering, hoping to be off of it soon. I am on 50mg Imuran, 3 pills Asacol 2x a day, and Remicade (3rd infusion today) and am doing better than I have at any point in the past year. I kno wthat once I am off of Prednisone this time I will never go back to it. At this point I think I would rather have surgery. It has been a long year and I think the side effects have at times been worse than the disease. I hope you find what works for you!

fruitgirl said...
vnct, have you ever been on any meds besides prednisone?

yes, but seldom.  asacol, dipentum, sulfasalazine, lialda, rowasa.  right now, i've just started asacol again with the prednisone.

I feel for those who have to be on prednisone. For those who don't, I would avoid it unless absolutely necessary.

Prednisone deteriorates the connective tissue. Connective tissue runs throughout our entire body. It supports and binds the other tissues. It wraps our organs. Skin, ligaments, tendons, cartilage, and bone are connective tissue. Even blood is considered to be connective tissue. The worst part is that diseases of the connective tissue that are not hereditary are anti-inflammatory. Just what we need--another anti-inflammatory disease.

Symptoms of deteriorating connective tissue or of connective tissue disease include:

skin problems (e.g. hair loss, skin thickening, change in skin color)

bone problems (e.g. pain and swelling, osteoporosis)

eye problems (e.g. glaucoma, vision deterioration)

muscle problems (e.g. weakness)

breathing problems (e.g. shortness of breath)

poor circulation in the fingers and toes with cold exposure

inflammation of the linings around the heart or lungs

difficulty swallowing

and, yes, digestive tract problems (e.g. weight loss, bloating, diarrhea)

My doctor assured me that most people start to imagine side effects because they read about them. He said that in order to show lasting side effects you must be on Prednisone at least 40mg a day for no less than 50-60 days!

AlAl said...
My doctor assured me that most people start to imagine side effects because they read about them. He said that in order to show lasting side effects you must be on Prednisone at least 40mg a day for no less than 50-60 days!

That's pretty scarey!  40 mg for 50-60 days doesn't seem like all that much.

subdued said...
I feel for those who have to be on prednisone. For those who don't, I would avoid it unless absolutely necessary.

Prednisone deteriorates the connective tissue. Connective tissue runs throughout our entire body. It supports and binds the other tissues. It wraps our organs. Skin, ligaments, tendons, cartilage, and bone are connective tissue. Even blood is considered to be connective tissue. The worst part is that diseases of the connective tissue that are not hereditary are anti-inflammatory. Just what we need--another anti-inflammatory disease.

Symptoms of deteriorating connective tissue or of connective tissue disease include:

skin problems (e.g. hair loss, skin thickening, change in skin color) Prednisone will actually cause more hair to grow and it thins the skin over a long amount of time. The hair I don't mind but my sister hates it. I like the darkening of the skin.

bone problems (e.g. pain and swelling, osteoporosis) I never had these problems but UC flares will cause joint pain.

eye problems (e.g. glaucoma, vision deterioration) My sister does have eye problems but these came prior to her use with prednisone so I wonder if the UC brings this about. I don't have these probelms either.

muscle problems (e.g. weakness) I find my strength increases and I am getting stronger as I get older and work out.
.
breathing problems (e.g. shortness of breath) I notice a shortness of breath when I get over 70 mg prednisone for several weeks and only during times when I get stressed.

poor circulation in the fingers and toes with cold exposure I never noticed this getting worse from the prednisone but I had this prior to taking the drug.

inflammation of the linings around the heart or lungs My heart and lungs are extremely healthy based on yearly physicals. I never had this problem.

difficulty swallowing I never had this problem.
and, yes, digestive tract problems (e.g. weight loss, bloating, diarrhea) I get weight gain, no bloating and no inrease in diarrhea. 

 

One thing not here is that above 60-70mg for several weeks my heart beats hard at times which is annoying; this occurs during times of stress. I also am quick tempered while on steroids so I tell the kids not to push their luck.

 

If I had to choose steriods again I would do it. Of course I would prefer another method if one ever helped. But steroids over surgery anyday. I guess the cutt-off periods depends on the individual and how well the person tolerates the drug. I tolerate it well I guess. I use as little as possible and get off it as soon as I can but am sure glad I had it as an option.