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Do you think Prednisone should only be used in severe cases?

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Posted 11/2/2007 5:28 PM (GMT 0)
I've been really shocked to read how many people are on prednisone here. My first doctor (10 years ago) put me on pred and I took it for about 8 months at a time... twice. I've barely used it since except for last year when I was seriously ill for months and extremely underweight.

Do other people feel that doctors prescribe pred because they don't know what other options there are? I really think that my first doctor just couldn't stand to wait to see what oral meds might work for me. I think we all know that it takes time and a lot of trial and error to see what med combo works for each person. I'm not beginning to think that the Pred wastes a lot of time while you try to get off it. You can't tell what else might be working that you could stay on as a maintenance drug.

I also think that doctors don't tell patients that tapering off pred can take a really long time and that for some people it can take over a year. For me, it's just a nightmare. The last time, I just kept tapering even though I felt like crap because I figured it wasn't worth dragging it out for a year.

The concept that you can taper off pred while another drug "kicks in" and picks up the slack.... seems to just be a concept. I've never experienced it working. Has anyone?

So here's the question to the group: Do you think that Pred is over-prescribed and that it should only be use if you're super-ill and ready to go to the hospital?

I'd love to know if anyone really believes in Pred as a good medical option.

Thanks!
Posted 11/2/2007 5:48 PM (GMT 0)
julee70

I believe we are prescribed Prednisone because doctors really don't know how or have limited knowlede on how to help us.  I read that most of the medication we take to help UC is based on medications used for other diseases or problems.  I don't know if that's the case or not but I gather the medical community really doesn't know too much about the disease.  So I can see that.

But I do have to say Prednisone has worked wonders for me but the side effects have been hard to deal with.  I guess I have to take the good with bad.

But as far as being prescribed another drug while tapering off this drug is new to me too also.  I just started taking Imuran about a week and a half ago while starting to taper off of Prednisone.  So I have no idea if that helps but that did strike me as odd when my GI doc told me that.

Also,  while I was in the hospital they shot Prednisone directly into my vains for 3 days straight every 6 hours (or maybe longer, I can't really remember).  Never told me the dose I was taking and never told me what the side effects were.  I have since learned to ask.

But as far as a good medical option, like I said,  it really help with my flare but the side effects are too hard on me.  It's really up the individual, I guess.

Posted 11/2/2007 6:08 PM (GMT 0)

julee70 said...

So here's the question to the group: Do you think that Pred is over-prescribed and that it should only be use if you're super-ill and ready to go to the hospital?

I'd love to know if anyone really believes in Pred as a good medical option.

Depends on the patient and the dosage. Different GIs have differing opinions about the risks vs. the benefits. Pred has the advantage of working really quickly and effectively for some folks. Immunosuppresants take quite a bit of time to kick in, if they're going to work at all. If the patient's flare can be brought under control with a relatively lower dosage and they're tapered off quickly, they can get immense relief and bring a flare under control without the side effects of long-term use and higher doses. There are also things the informed patient can do to counteract the side effects of pred.
Posted 11/2/2007 6:27 PM (GMT 0)
I've been on pred a couple of times. Each time was for eight or nine months. I'm one of those that's considered steroid dependent.

I don't want to be on pred ever again. It would literally have to be an almost life or death situation.

One good thing about the drug I love to hate is that for some people it works quickly and efficently. There are times when a patient needs that "instant" control of the disease.

I do think that patients need to be informed about the prednisone. Unfortuately, until one has tried it, you don't really understand the side effects. Also, many docs use it as a first course of treatment - for a patients first flare, before they can ever really become knowledgable about the drug and it's effects.
Posted 11/3/2007 3:55 AM (GMT 0)
I think Prednisone can be a huge help for a lot of people with UC. For many, it's the quickest and surest way of moving into remission so the maintenance drugs can do their thing. My GI was constantly working with different meds to try to help me get off of Pred. And if it can be a short-term treatment, the benefits probably outweigh the risks.

In my case, I had been tried on every other medication or combination of medications, yet every time I went off Pred I was back to bleeding on the porcelain throne 20 times a day. At the same time, I was unlucky enough to be one of the people who gets all the really ugly side effects. Most people don't have that experience and Prednisone can be one more tool in managing the disease.

After being here for a while, I've seen that each of us is different. We have different groups of symptoms, respond to different treatments and deal with the disease psychologically in different ways. Then there's the problem with telling what really "works" because the natural course of the disease. It comes and goes, flares and goes into remission, sometimes due to what we do and sometimes despite what we do.

As for me, I don't believe I'd ever take Pred again.
Posted 11/3/2007 4:57 AM (GMT 0)
Prednisone should be reserved for severe cases of UC or as a TEMPORARY stabilizer.

Additionally, many doctors seem to possess a deficiency that inhibits their ability to adequately verbalize the nasty side-effects associated with the drug.
Posted 11/3/2007 6:08 AM (GMT 0)
Only a good doc will prescribe it when disease activity is severly active, it has most benefit when prescribed at 40mg/day or higher and when weened off of it properly...any doc that over prescribes it or doesn't start a patient out at a high enough dose doesn't deserve to have a license.

:)
Posted 11/3/2007 8:05 AM (GMT 0)
It's waaaaay too overprescribed and used as a first-line med unnecessarily. It's cheap.

I think it should be used after the "supposed to be" first-line meds are exhausted.

A short tapered course could be used as a booster with the 5ASA meds.

It's a miracle med....for sure. I think it's an easy out for many docs who like to do things "the old-fashioned way".

Have I ever been on it??? never needed to be because the 5ASA meds have worked......definitely slower but consistent on the improvement scale.

Will I ever be on it? I'd have NO problem with a 10 day to 2 week fast tapered course. Too many bad things about it that I'm not willing to risk for longer term dosaging.

One has a right to refuse any meds.

Regarding members on this site who have been on pred.....all I see is misery and some with serious side effects. 

quincy

Posted 11/3/2007 11:04 AM (GMT 0)
I guess everyone is different, I do believe that it is important to get a flare up under control as quick as possible, you dont want to get any sicker or more run down than you have to. Take care Lulu x
Posted 11/3/2007 12:34 PM (GMT 0)
I have never been on pred in the whole 15 years that I've had this because my GI is one of the few (from what I have learned on here) that refuse to put his patients on pred unless he absolutely has to. I was down to the wire last year when I was in a highly resistant flare and he almost put me on pred to calm it down but luckily we decided to wait it out with the steroid enemas instead.

But I agree that it's prescribed too fast. Sure it can help settle a flare quickly but the long term affects of this med can be somewhat scary. Short doses here or there may not be a problem but many Uc'ers need the long term treatment dose to get their flares under control. That in itself can lead to possible complications outside the GI tract.
Posted 11/3/2007 1:10 PM (GMT 0)
It's a moot point for those like me that cannot tolerate any 5ASA drugs whatsoever and don't go into remission on imuran or 6MP. I do have alove / hate relationship with the stuff because it (pred) is a 'wonder" drug for me but I also know how toxic it is long term, so if TSO or hookworm or something doesn't get me into a long remission I will have to ditch this colon once and for all.
Posted 11/3/2007 1:26 PM (GMT 0)
I agree that pred is a mixed bag.

I had such a hard time getting off of pred the first time (took about three years of tapering and raising) my gi left it up to me if i wanted to try it again. I did because my graduation was a week away and I wanted to walk the stage. I am steroid dependent now so after I get through this flare my Gi won't use it again. But it did allow me to get through my graduation in Feb so i have to be grateful. This drug has done terrible things to my body and mind over the past ten years. Now at 15mg i am unable to lower my dosage at all without flaring. I've been here about a month and can feel my body slipping backwards again.

Now i have the problem of if imuran doesn't work (its been about three months and i am having more symptoms than before) I don't have pred to fall back on. My Gi wanted me on Remicade becuase it has been shown to show resultsw faster than imuran, but my insurance wouldn't go for it.
Posted 11/3/2007 2:28 PM (GMT 0)
Kelly, that's how I ended up on Pred also. After a year of juggling all the other treatments, I was down to a choice of Pred, Remicade or surgery. Remicade wasn't yet approved, so the insurance wouldn't cover. I wasn't ready to take a step as final as surgery. So my choice was the Pred or to continue with a life that at that time wasn't worth living. I was literally on the toilet 20-25 times a day with heavy bleeding and pain.

I agree the Pred should be reserved for treating bad flares that don't respond to any other comination of treatments. It just has too many negatives to be used simply because it's quick and easy.
Posted 11/3/2007 4:56 PM (GMT 0)
In my 16.5 yrs of dealing with crohns-colitis being on and off pred many times, I can say that for me it's no longer affective so there's no guarantees with it either.

:)
Posted 11/3/2007 5:01 PM (GMT 0)
I don't believe that prednisone should be a long-term treatment. When I see folks on pred for months at a time -- that's a scary thought. I think prednisone should move you from flare to remission, while also starting you on Asacol, Rowasa or whatever is your long-term maintenance medication, and then it's time to get the heck off of it. It's wonderful to bring inflammation under control, but the long-term side effects are truly awful. So it's wonderful/awful.

Mitz
Posted 11/3/2007 5:06 PM (GMT 0)
I personally suspect...but have absolutely no proof....that pred used initially can set up failure of 5ASA meds. It could be just that expectations is the culprit.

q
Posted 11/3/2007 7:51 PM (GMT 0)
I agree that Pred should be reserved for severe UC. It saved me within hours at 40 mg/daily when I was near blockage on the left-side. My gastro had me tapering after 8 days & I was able to get off it at the end of 3 months. This happened 12 yrs after my initial diagnosis & was the only time I had to take it-- so, my feeling is that if you're in crisis mode, take it to avoid worse. / Old Hat (nearly 30 yrs with left-sided UC;currently on 3 Colazal daily;seem to be back in remission)
Posted 11/5/2007 3:46 PM (GMT 0)

I do think it is over prescribed

I have been on pred for 4 years and am steroid dependent.  I have tapered down to 6mg now but I cannot get completely off it.

Posted 11/5/2007 4:48 PM (GMT 0)
They put me on Prednisone 2 months after being diagnosed and I have to say it did wonders in the beginning for me. The side effects were a small price to pay(in the beginning) for being able to get out and do stuff. If it wasn't for pred I wouldn't of been able to go to Prom. After a while it cost me a lot though(relationships and friendships due to severe mood swings even), so thus I rule it out as 50/50 for being worth it.
Posted 11/5/2007 5:13 PM (GMT 0)
If I could do it all over again I would never have used Prednisone.... the side-effects weren't worth it in my opinion. There are more effective meds than Prednisone.

I think one of the issues that is over-looked with Prednisone is that it makes it more difficult for J-pouch surgery. It weakens your muscles which makes surgery more difficult. I met with a CR surgeon last month and he told me that I should be able to have a 1-step laproscopic J-pouch surgery because I haven't been on Prednisone in a couple of years. Otherwise I would have to have the 2-step J-pouch surgery and wear a bag for a couple of months between the first and 2nd stages of the J-pouch surgery. And who really wants to have to go for 2 surgeries when you can go for just one surgery.

--Keith
Posted 11/5/2007 8:54 PM (GMT 0)
Hi - Prednisone was a life saver for me. Speaking of underweight, at 5'6", I was down to 108 pounds and couldn't care less if I ate or didn't. My GI put me on 20 mgs of pred (to start for 12 weeks) for the sole purpose of revving my appetite, which it did!! Then when I got my appetite back normally, he tapered me off very gradually 2-1/2 mgs at a time for 10 days each dose until the end. At that was the end of it. So...the only purpose, he said, for the pred was to help me regain a normal appetite and then get off it as quickly as possible.
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