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Prednisone ???

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Ulcerative Colitis
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Posted 6/28/2008 10:06 PM (GMT 0)
Hi Guys,

I'm extremely new to this.  I was just diagnosed on Monday.  As some of you may already know, my doctor prescribed Prednisone, but I am reluctant to take it because in addition to UC I also found out that I may have kidney cancer.  Either way, I have to have my kidney removed and the Prednisone could seriously complicate my surgery.  So far I've been getting better with Asacol and Culturelle and fish oils and maybe Mother Nature.  I've decided against the Prednisone for now.

This is my question.  Why even bother with the Prednisone?  Every single thing I've read has nothing but bad to say about this drug.  It's in no way a cure all by any means.  Do it's advantages outweigh the risks, because I have yet to hear of any advantages whatsoever.  The more I read, the more it scares me.  People have been on this drug for years and slowly tapering???  Not just with UC but with other ailments as well.  My doctor told me a month.  How can I trust that?  It seems that no one is on this drug for the amount of time originally prescribed.  I've read that symptoms get worse when you start to taper only to have to increase the dosage again.  I just don't see the benefits, especially with the long-term irreversible side effects that come as a "bonus".

Forgive me if I'm way off base here.  I'm extremely new to all of this.  It's just that one horror story after another really makes me wonder if this drug is really helping or making everything else worse.

Thanks for letting me vent,

Lisa E.

Posted 6/28/2008 10:21 PM (GMT 0)

i have been prescribed pred twice following a flare up - both times, i would say, it worked wonders ( seemed to work better the first time )

each time i was on less than a month.  i dont know what to tell you about these long term users. from what i understand long term use can lead to neg. sides

Posted 6/28/2008 10:45 PM (GMT 0)
I've opted to stay away.
Posted 6/28/2008 10:51 PM (GMT 0)
Prednisone is used to induce a quick remission by eliminating the inflammatory response. If you're satisfied with the results you're getting from your other medications, you may not need it. It has its place in treating UC, but sometimes becomes a problem if our bodies aren't responding to the maintenance drugs, because the symptoms can come back as we taper.

Remember that the folks who are posting here tend not to be success stories in the easy management of UC. The vast majority of people with UC take their 5-ASA's, perhaps some probiotics, and live normal lives. They may have a flare anywhere from a couple of times a year to once a decade, and these are put to rest with short course Prednisone. The simple answer is, Pred is used when the maintenance drug is no longer maintaining you, to get you back to where the maintenance will work. If you have to be on it more than you're off, you need a different maintenance medication or surgery.

Unless your colon was extremely fragile from ulcerations or you were experiencing unbearable symptoms, I would have thought your doc would do a two to four week trial of the 5-ASA, then add in the short burst of Pred if that didn't work.
Posted 6/28/2008 10:59 PM (GMT 0)
Hi Judilyn,

My colon is basically chopped meat. The doctor only went up 75% with the scope because he was afraid of doing further damage. He was on the fence with the Prednisone and didn't want to prescribe it, but he thought it was necessary. I'm just so scared because of all the horror stories that are out there. I'm also 41 years old and my body isn't getting any younger. I come from a long line of little shriveled up Italian woman due to osteoporsis and I don't want to look like the hunchback of Notre Dame before my time!!! LOL If you think I'm kidding, I'll send you a family picture!! LOL

Thanks so much,
Lisa E.

PS - Gymratin, I'm so happy that the Prednisone worked for you.
Posted 6/28/2008 11:27 PM (GMT 0)
Lisa - I would strongly suggest that you kick your GI and your Urologist to talk to one another.

Prednisone CAN be a useful tool. If you have never used it before, it will probably work for you rather quickly.

Often with many of us on this forum, we have had to use Prednisone many, many times and a lot of us have found that with each subsequent use, its effect diminishes. Ideally, prednisone *should* be used in very high and short bursts, say 40mg for 2 weeks, then 15 for a week, then 5 for week and then stop. The long term, permanent side effects you read of come from long term use of prednisone. Extreme long term tapering is required when steroid dependence sets it, which usually requires prednisone to have been used for a couple of months or more.

In your case, the kidney difficulty would make it hard for your GI to know weather you should take it or not. I am going say that for the moment, until you have spoken to BOTH specialists and they have spoken to one another, I would *try* to hold off. Prednisone is rather hard on the kidneys and liver, and as Judilyn mentioned above, its primary function is to act as an inflammation dampener.
Posted 6/28/2008 11:30 PM (GMT 0)
I have had a long and rocky relationship with prednisone. Its definitely a good way to get the bleeding and inflammation under control. If you have never used it before it will most likely be effective and you wouldnt have to take it long. I keep having flares and the prednisone worked the best the first time, and now its not working at all. I have been taking prednisone for a year straight and off and on a few years before that. The side effects aren't fun, but if youre only on it for a month or so it shouldnt effect you too bad. If you can get the inflammation under control other meds should help you keep it that way.
Posted 6/29/2008 12:33 AM (GMT 0)
Severin - the two doctors did speak. They actually met in order to discuss my case. My urologist is very concerned from the surgical end of things and my GI feels that I need the prednisone, so basically they agreed to disagree. I called up my PCP, who first noticed the kidney and first suspected ulcerative colitis, and asked him what I should do. When I expressed my concerns and my current condition (3-5 BM's with little or no blood) he felt that I should hold off on the prednisone and see if I continue to improve. The GI and the urologist I know for weeks, but my PCP I know for decades. He's never steered me wrong and I even told him that if he told me to take the pills I would. Believe me, I am agonizing over this. If it weren't for the kidney, I wouldn't even hesitate. It's just that if the prednisone interferes with my surgery, UC will be the least of my problems. I want this kidney out and I want it out yesterday. The prednisone - even if it works wonders - would delay things for over a month. This is not a kidney stone. There is a 90% probability that it is cancer and time is of the essence.

NeonDream - I would have to agree with everything you said. That is usually true of all drugs, not just prednisone. They usually work best the first couple of times. I know (first hand) with painkillers that you build up quite a rapid tolerance level rather quickly, which I'm sure holds true for just about everything else or most everything else. But, like I said, my kidney and this surgery has to be my primary issue. Anything that can delay this surgery could potentially be a matter of life and death for me. There is no treating kidney cancer once it spreads.

Thanks again for all your help. You have no idea how much you guys have helped me over the last couple of days. I mean it sincerely, from the bottom of my heart.

Lisa E.
Posted 6/29/2008 8:49 PM (GMT 0)

I was only diagnosed with Colitis in March of this year...it was a very bad case, I was in the ER, etc.  The Dr put my on Predisone, which I was on for about 3 months, the max dosage that I was on was 3 pills (1MG) 3 times a day.  The Predisone made me very, very hyper, I had to make sure to take all of the pills before noon.  And the side effects were killing me...I was very depressed and it didnt get better.  The colitis slowly got better with the Predisone and Asacol, then I was diagnosed with C-Diff...so I was put on Flagyl.  As I was decreasing the Presidsone, at the drs request...I was getting HORRIBLE migraine headaches...I have never felt a headache like that. 

So in my opinion the Predisone did help with the Colitis but the side effects and coming off of it was horrible!!!

Posted 7/5/2008 7:17 PM (GMT 0)
I am not sure what I detest more. The side effects of the disease or the side effects of Prednisone and potential long-term effects:

UC:
- Uncontrollable urgency
- Fear of public incontinence
- Cancer
- Inability to leave the house during flares
- Multiple BM's per day, night and mid-sleep

Prednisone:
- Irritability
- Bone loss
- Hunger
- Hair issues
- Sleeplessness
- Liver/kidney issues
- Eye issues
- Erosion of esophagus & stomach lining

When Prednisone works, I prefer it over the disease and it's dreadful posse of embarrasments.

Bottom line: it is your body, go with what you feel is best for you.

Good Luck,
~ TSM
Posted 7/5/2008 9:53 PM (GMT 0)
I cant take pred and when I am in a flare I up my asacol and so far ( knock on wood ) it works, I also use canasa suppositories when needed. I would ask about other meds.
Posted 7/6/2008 7:17 AM (GMT 0)
Prednisone is good for short term 1 to 3 months. After that, it becomes bad for you. It also turns your internal organ walls into butter. They cannot hold staples or stitches during surgeries. I learned that first hand. It also slows down your healing ability. I got osteoporosis from it after a year. I had my colon removed and now I don't need to bother with drugs anymore.
Posted 7/7/2008 6:28 AM (GMT 0)
Everyone's done a good job here regarding the prednisone Q you had...I just wanted to send you my sympathies for your possible kidney cancer (and your UC DX) and am sending you best wishes that ALL works out for you.

:)
Posted 7/7/2008 3:58 PM (GMT 0)
I had been thinking about writing about basically your same question.  If you have a flare and choose to up your maintenance drugs but not take the Prednisone, if the flare does not get better, what irreversable harm is the flare doing to your body?  I have been on Pred twice in the past year, and I believe it has done horrible things to my bones, joints, and I have gained twenty pounds that I cannot get rid of.  When the next flare comes, I think I would rather run to the bathroom for a couple of months before taking the Pred again.  At least maybe I will drop the twenty pounds before gaining ten back on the Pred.  Is flaring doing anything to your body except for just being an inconvenience and some pain?

Posted 7/7/2008 4:12 PM (GMT 0)

Lisa, I don't mean to Hijack the thread, but how did they find out you had kidney cancer? They are monitoring me as well for the same thing and its pretty scary.

Donna

Posted 7/7/2008 4:22 PM (GMT 0)
I have consistently refused prednisone.  (There have been moments where I'd thought I'd cave, but so far I haven't.)  My personal philosophy is to manage uc with 5-ASAs.  If that can't be done, then it's time for the colon to go.

My colitis is mild to moderate, based on most measures.  4-5 bowels movements a day, currently very little blood (but I was bleeding like a stuck pig in May), some cramping, little urgency.  My problem areas are high in the colon.

My doctor is fond of telling me all the horrible things I'm doing to myself by continuing to refuse steroids.  Among the many possibilities he gives are that continued inflammation equals higher cancer risk.  The connection, though, between inflammation and cancer is not iron clad.  He is also concerned about fistulas.  He likes to think my fatigue is associated with inflammation.

I would rather live with the symptoms of uc than the side effects of prednisone, but that's just me.  In my case, switching 5-ASAs has made huge improvments and if I had taken steroids a year ago when my doctor first started pushing them, I hate to think how many cycles I'd have gone through before we realized the 5-ASA wasn't working. . . .

So far, the worst problem with refusing prednisone is that my doctor has brsuhed off some of my complaints, like fatigue.  I haven't had a chance to talk to him yet -- in a couple of days I will -- but recent bloodwork shows an abnormality that explains the fatigue.  If only he had listened to me 6-8 months ago when it started to get worse, I might not be as exhausted as I am now.  Instead of ordering this bloodwork then, he pushed the pred.  Again.

Posted 7/7/2008 6:51 PM (GMT 0)
Hi Guys,

Thanks for all the prednisone info. It really helped. I haven't been posting because I am a complete basket case. My kidney surgery is scheduled for tomorrow morning and it looks like it is really going to happen. I'm absolutely terrified!!

PB4 - Thank you for your concerns and your well wishes. I'll take them with me tomorrow morning.

Pupluv - I'm newly diagnosed with UC. When I went to the emergency room, the first thing they did was order a CT scan of my abdomen. They found the kidney by accident. The word they used over and over was "incidental". Anyway, there is no way to biopsy the kidney because the mass is contained within a thick membrane. If it is disturbed, there is a higher risk of the cancer spreading. Statistics show that approximately 85-90% of kidney masses are malignant, so my doctors are definately treating this as cancer. If you want to e-mail me, my e-mail addy is [email protected]. I'd be more than happy to answer any questions you may have. I KNOW exactly how you are feeling. Scary is an understatement. But, sometimes talking with someone who has the same thing is comforting. I'm here if you need me - well, at least for today!!! LOL Tomorrow, I think I'll be a little under the weather!! LOL

Lisa E.
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