Does use of steroids in Crohn's disease increase the chance of perforation, fistulae, and/or other complications?

[David]

Jennifer recently asked our panel of experts:

Does use of steroids in Crohn's disease increase the chance of perforation, fistulae, and/or other complications? A medical doctor who posted once on our forum stated,

Steroids should be avoided if it is Crohn's as it promotes perforation and fistulization. I always tell my Crohn's patients that 9 out of ten times, you will get a Crohn's patient better with steroids at the cost of a ton of side-effects; however, nine out of 10 patients with complications were on steroids.

Dr. Andrew Tinsley, M.D. of the Penn State Hershey Inflammatory Bowel Disease Center took time out of his busy schedule to answer this question. A little about Dr. Tinsley:

Dr. Andrew Tinsley was born and raised in England but attended medical school at the University of Vermont in Burlington. Following graduation from medical school, he completed internship and Residency in Internal Medicine at Massachusetts General Hospital / Harvard Medical School. He then entered a Gastroenterology Fellowship at Mount Sinai School of Medicine, NYC. While there, he was mentored there by Dr. Bruce Sands and received his IBD training from the likes of Asher Kornbluth, David Sachar, Thomas Ullman and John Fred Colombel. He was the Chief GI Fellow at Sinai in 2011-2012 and, while in New York, he also received a Masters in Biostatistics from Columbia University.

Currently, Dr. Tinsley is an Assistant Professor of Medicine at Penn State Hershey and Associate Director of the IBD Center there. In addition to seeing patients at the IBD Center, he carries out clinical research related to Crohn's disease and ulcerative colitis. His focus is on optimizing current treatment strategies and improving patient outcomes. Dr. Tinsley is a member of the CCFA and is fortunate to be part of a their IBD quality of care committee.

In regards to the question, Dr. Tinsley stated:

In general, I try to minimize (or avoid altogether) the use of systemic steroids (i.e. prednisone) in Crohn’s patients if at all possible. This is based on current guidelines, clinical observations and teaching I received during my inflammatory bowel training at Mount Sinai. There are many reasons for this approach. The first is that, while steroids can lead to short-term disease improvement, they do not appear to be able to fully heal intestinal tissue over time (also known as mucosal healing). The ability of a Crohn’s medication to achieve mucosal healing is being increasingly recognized as an important treatment goal.

In contrast, other therapies such as azathioprine, mercaptopurine and biologics have been shown to accomplish this objective. While I am not aware of any specific research studies that prove that steroids actually promote perforation or fistula formation directly, these complications are more likely to happen when inflammation is not being fully treated and continues unchecked over time (despite many patients feeling better from a symptom standpoint). If a patient is found to have fistulizing Crohn’s disease, I avoid steroids altogether as they have never been shown to be effective in healing fistulas.

In addition, long-term steroid use can lead to other significant side-effects and complications. These complications include bone mineral density loss and risk for osteoporosis, avascular necrosis of the hip, glaucoma, hypertension, weight-gain, hyperglycemia, impaired wound-healing, increased risk of infections, as well as both sleep and mood problems. Along with narcotic use, long-term steroids are the only medications that have been shown to be associated with mortality in inflammatory bowel disease patients. Unfortunately, I often see patients who have been exposed to months and years of steroid use because of fear (by patients and/or providers) of potential side effects of other therapies. Using steroid-sparing medications such as azathioprine, mercaptopurine and biologics early in the disease course is a key strategy for effective and quality care for Crohn’s patients.

Thank you to Dr. Tinsley for his time and expertise!

 

[David]

I see a LOT of people on this forum put on prednisone who have fistulizing Crohn's. It seems especially popular in the UK. I ask the community to link to this thread when you see such stories. We need to help improve the treatment of Crohn's disease around the world.

 

[Clash]

I am really enjoying "ask the experts". It has been very informative. It had not occurred to me when my son was hospitalized earlier this year that steroid treatment wasn't even mentioned. At his follow up appointment I mentioned this and his GI's response was similar to the explanation Dr. Tinsley provided.

Thank you to those that came up with this subforum, the members for putting forth such great questions and the medical professionals for lending their time and knowledge!

 

[Jennifer]

Very good to know. Thank you to Dr. Andrew Tinsley.

 

[afidz]

This is great information, I had no idea that this was an issue. My question is though, how do you tell your GI that you don't want to be on steroids? What could someone suggest instead?

 

[David]

The conventional treatments would be biologics such as Remicade, Humira, or Cimzia or thiopurines such as Azathioprine or 6-MP.

 

[afidz]

Yea, those are all good treatments, but a doctors first choice is prenisone because it works fast, and those meds don't. So how do you get around a doctor wanting to control inflammation right away?

 

[seebee]

Why can't you tell the doctor that you want to avoid steroids?

 

[DustyKat]

I understand what Dr Tinsley is saying...but...I am still a little unclear about things. :facepalm:

I know the effects of long or longer term steroids but what time frames are we talking about here. Does the 6-8 week course of Pred whilst waiting for the thiopurines to kick in fit into this?

Dusty. :redface:

 

[David]

That's a good question Dusty. Thoughts on submitting a followup question along the lines of,

"While systemic steroids don't appear to induce mucosal healing, what is your feeling about utilizing them as a bridge therapy while waiting for thiopurines to reach therapeutic levels? Or do you have a different bridge therapy you prefer?"

 

[DustyKat]

Sounds perfect to me David.

 

[xX_LittleMissValentine_Xx]

I was thinking the same as Dusty. I have fistulizing crohn's, and went on a course of steroids just before my fistula surgery. But this was just to get a flare under control, as I was in so much pain and bleeding I was hospitalised.
Surely you need steroids in this situation?

 

[Kev]

I've heard that diabetes is a common side effect of long term steroid use. Are there any hard N fast stats on this? What are the odds of this for someone contemplating steroids? Does it increase with prolonged use? If yes, by what magnitude?

 

[alex_chris]

Yea, those are all good treatments, but a doctors first choice is prenisone because it works fast, and those meds don't. So how do you get around a doctor wanting to control inflammation right away?

It's the first choice for severe flare ups and then only for a few weeks. In 14 years of Crohn's I have been on corticosteroids only 4 times (despite inflammation quite a bit more often...) and at no time more than a few weeks. I knew of the dangerous side effects of corticosteroids from my sister who has atopic dermatitis and a very good doc warned my mother about excessive use early on - there is massive literature on the subject for diseases outside CD.

You get around a doc wantng to control inflammation short term, by saying no to corticosteroids except if you are in a really bad flare... and then you should immediately work on your long term management of Crohn's and tap off corticosteroids quickly.

 

[Dekar]

This is a serious matter. I'm pretty sure Prednisone is what caused by bowel to perforate and for me to almost die back in 2010.... dont take pred.

 

[alex_chris]

This is a serious matter. I'm pretty sure Prednisone is what caused by bowel to perforate and for me to almost die back in 2010.... dont take pred.

How long did you take pred? Long time can indeed lead to such serious side effects, so I wonder at what dosage and how long you were exposed.

 

[DeeDee39]

I have been on steroids numerous times (8 or 9) and can honestly say that they have been beneficial each time. Every time was the same using Prednisone 5mg sugar coated pills - Day 1 to 5 x 40mg; Day 6 to 10 x 35mg etc until my last tablet over a 40 day period. The only problems for me was that I had to be constantly eating, I would eat anything, including foods I didn't normally like, I got serious 'moon face', my weight increased at a rate of 14 pounds per week and I shrunk in height by 2 inches and my feet shrunk by 2 sizes! I have had bone density tests done and there is no evidence of osteoporosis therefore I am happy to use steroids if required as for me, there was only benefit. I may find out in later years that this is not really the case but it is something I can live with now.

___________________________________________________________________
Crohn's started 1988
Diagnosed 1990
First surgery (1/3 ileum removed) 1991
Second surgery (1/3 ileum removed) 1999
Last surgery (remainder of ileum removed and ileostomy in place) 2005
Current Medication - NONE since 2005 - woo hoo!!

 

[alex_chris]

Hey DeeDee, short term steroids are fine and for me they have also always helped a lot in acute flare ups. But it definitely true that overuse can lead to serious side effects, especially affecting the intestine's tissue that can lead to all kinds of things from strictures to easier scaring to perforation. Steroids may also lead to Osteoporosis, but definitely isn't the only or the most serious effect of overuse of steroids (actually bone density tests are usually done because aza pr 6mp can lead to osteoporosis, at least as far as I was told).

 

[Dekar]

How long did you take pred? Long time can indeed lead to such serious side effects, so I wonder at what dosage and how long you were exposed.

June 9 40 mg 2x20
June 10 40 mg 2x20
June 11 40 mg 2x20
June 12 40 mg 2x20
June 13 40 mg 2x20
June 14 40 mg 2x20
June 15 40 mg 2x20
June 16 40 mg 2x20
June 17 40 mg 2x20
June 18 40 mg 2x20
June 19 30 mg 1x20 + 1x10
June 20 30 mg 1x20 + 1x10
June 21 30 mg 1x20 + 1x10
June 22 30 mg 1x20 + 1x10
June 23 30 mg 1x20 + 1X10
June 24 30 mg 1x20 + 1x10
June 25 30 mg 1x20 + 1x10
June 26 30 mg 1x20 + 1x10
June 27 30 mg 1x20 + 1x10
June 28 30 mg 1x20 + 1x10
June 29 30 mg 1x20 + 1x10
June 30 30 mg 1x20 + 1x10
July 1 30 mg 1x20 + 1x10
July 2-8 emergency resection (enormous amount of IV pred)
July 9 20 mg
July 10 20 mg
July 11 20 mg
July 12 20 mg
July 13 20 mg
July 14 20 mg
July 15 20 mg
July 16 10 mg
July 17 10 mg
July 18 10 mg
July 19 10 mg
July 20 10 mg
July 21 10 mg
July 22 10 mg
July 23 10 mg
July 24 10 mg

 

[Paul Cronk]

My use of steroids started as the only way of controlling flares. Then after Humira had worked for six months and then failed, Prednisone is the only option. The signs of Crohns n my terminal illium have disappeared, so the doc won't give me Aza. However I have the symptoms as bad as ever and I am still very uncomfortable despite 20mg Prednisone p.d.

Now I think I may be borderline diabetic. and I need to get off the Pred but I need something to work! The vicious anxiety circle has come back so I am on higher doses of Amitriptyline. Losing weight steadily.

Still, at least with the Ami I am less worried about it all!

 

[Mr D.]

I'm quite worried after reading this. I have Crohn's, and I have what the GI called a "dry fistula", which I think means it's not a complete fistula yet. He has put me on prednisolone to begin with to relieve symptoms, and has also put me on azathioprine which he said will help heal the fistula so that I may avoid surgery in the future. Now I am wondering if I should ask him to reduce my prednisolone dosage once the initial symptoms are gone, and just stick with the aza. I must admit, though, that the prednisolone has already done wonders for me, and I've only been on it for a week.
It's so hard to know what to do.

 

[Paul Cronk]

It's a marvellous drug for short term use but try to avoid long term usage which has harmful side effects. At present I have no choice because I cannot get Aza. I would suggest to your doc to let you taper the Pred as soon as the Aza kicks in. From what I read that can be a few months.

 

[Mr D.]

Thanks Paul, I might suggest that and see what he says.

 

[leahsmom]

Paul have you research LDN that might help you.

 

[Crohn's gal since 1989]

That's a good question Dusty. Thoughts on submitting a followup question along the lines of,

"While systemic steroids don't appear to induce mucosal healing, what is your feeling about utilizing them as a bridge therapy while waiting for thiopurines to reach therapeutic levels? Or do you have a different bridge therapy you prefer?"

I'd be interested in this answer too as this is my current treatment plan.

 

[Ckoenig]

When we are all talking about steroids here do we also mean entocort not just
Prednisone? I know it is a steroid, but I see it referenced less.

 

[Jennifer]

Prednisone is the most commonly used but Entocort and other steroids are included.

 

[Farmwife]

Sorry I don't know if this was stated but what does one consider long term use of steroids?
Length of time?

 

[Jennifer]

Yes length of time. Long term use would be over 3 months including the taper.

"Treatment continuing for more than 3 months is regarded as long term, and results in the majority of undesirable side effects." http://dermnetnz.org/treatments/systemic-steroids.html

 

[fozheart]

Yes- long term steroid use was the culprit of my perforation in 2010. (On and off of prednisone for 15 years (for Lupus). I can't live with it, and I can't live without it!

 

[David]

fozheart, your doctor attributed it to the steroids?

 

[fozheart]

It was very bad acute diverticulitis, which was found in a CT I had taken in the ER. High WBC and low grade fever. I needed surgery ASAP, but my doctors wanted me to stabilize and get the infection under control first. At this time, they were already worried, because I was on predinsone, and had been, for quite a few months. (and on and off of it for many years.) I spent my 1st week in the hospital with an NG tube, lots of IV antibiotics, a slew of doctors, and pain that was getting worse. One night I had to literally beg the nurse to call the doctor back to the room. He sent me down for another CT, which showed that I had a perforation in the sigmoid colon. Yes.... they blamed it on the prednisone- long term use weakens the connective tissue. (Does not make sense... I was put on prednisone FOR treatment of my mixed connective tissue disease.) They said that in a normal person, the antibiotics would have made the diverticulitis go away.

Sorry if this does not make sense! After 3 surgeries in 6 months, we stayed FAR AWAY from steroids.... for a while.

 

[Amaze]

I was put on steroids for 6 months. 1 month after I was off of the roids I have 2 fistulas.

I am very irate if the pred was the reason behind my fistulas.

 

[Amaze]

so this is confirmed? is there any research or studies behind his answer?

If so please let me know because I have a lot of yelling to do when I see my GI next time

 

[Jennifer]

Dr. Andrew Tinsley, M.D. stated, "While I am not aware of any specific research studies that prove that steroids actually promote perforation or fistula formation directly, these complications are more likely to happen when inflammation is not being fully treated and continues unchecked over time (despite many patients feeling better from a symptom standpoint)."

So no there aren't any studies Amaze but the main point is that the disease isn't being treated properly which eventually may lead to further complications like fistulas etc.

 

[fozheart]

I did not mean to cause any alarm with my experience with steroids. Like Jennifer said, there are not proven studies. This is just what happened to me, and the opinion of my team of doctors. Everyone is different, so please do not yell at your doctor, Amaze!

 

[leber]

When my disease was diagnosed, first I got steroid(Medrol). It was the worst part of my life :/

Good to know. Thank you !

 

[tots]

:runaway::runaway:Officially overwhelmed- going to sleep- (right, 30mgs prednisone) will start over I. The morning!