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oral cortisone : risks and benefits?

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Posted 11/24/2017 1:10 AM (GMT 0)
Hello,

I'm new here. I'm Ben, male, 55 y. o. , diagnosed with UC in 1987. Till 2015, I had only every 3 to 4 years a rectal inflammation that subsided with Lialda or rectal foam but in 2015-2016 I had a flare that lasted for 9 months. Finally, the colonoscopy revealed a procto-sigmoiditis on 50cm. I was given Entocort and it was a miracle. I felt better immediately and the flare subsided although Entocort is usually for Crohn's disease.

But since the beginning of October, I have a new flare. Till now, Lialda, rectal foam, Canasa suppositories and Entocort did not bring any improvement. I'll see my gastroenterologist on Tuesday and ask for cortisone enemas.

Here is the situation:
I have always mucus in the first bm. Then, everything's OK, except for joint paints at the top of my legs. No blood, no abdominal pain.

My questions now:

-If the gastroenterologist wants to give me oral cortisone like prednisolone - which I never had before - do the benefits outweigh the risks?
-Is it possible to get a corticoid dependency during the first course of steroids?
-would it be better to start with Imuran right away instead of taking prednisolone ?
-is it a good idea to ask for cortisone enemas before.

As you can see, I feel lost - and depressed because I'm afraid of long-terme side effects of aggressive treatments. What would you recommend me?

Thank you in advance for your support.

Ben

PS : English is not my native tongue, so, please excuse my mistakes.
Posted 11/24/2017 3:07 AM (GMT 0)
I think I'd get stool tests firstly. As for dependence, do you mean inability to stop taking prednisone without symptoms reappearing? That can happen when there is no plan for maintenance prior to tapering. Since it sounds like you're open to starting additional medication, I wouldn't expect you to have trouble getting off prednisone. The reason most people end up on prednisone, is because their symptoms are severe and intolerable, and imuran/6mp can take a month+ to have results. People will take prednisone during that time to eliminate severe symptoms. If the symptoms are mild, I personally would avoid prednisone. Of course, IBD is tricky and nothing works for everyone, so it's hard to know how anything is going to work for you. Have you tried Uceris? I would definitely ask for enemas, both steroid and mesalamine.
Posted 11/24/2017 1:22 PM (GMT 0)
Hello,

thanks for your answer!
Yes, I take Uceris. I wrote "Entocort", it's the same thing. But although it had worked wonders in 2016, this time, I don't notice any change. Always mucus in the first stool of the day and joint pain.
I share your opinion. I'd like to avoid prednisone since my symptoms are very bearable.

If unfortunately the gastroenterologist wants me to take prednisone, how is it usually for the first course of corticosteroids? How long does it last?
Posted 11/24/2017 1:36 PM (GMT 0)
See my inline answers below

Benoît said...
My questions now:

-If the gastroenterologist wants to give me oral cortisone like prednisolone - which I never had before - do the benefits outweigh the risks? Yes, the short term use of prednisone for a moderate to severe UC flare outweighs the risk. For very mild flares, pred can be avoided. I'll gladly take pred when I'm 20+
Bms a day, in pain, and feeling beyond awful. It's rocketship fast in coming to the rescue while you're new meds and doses are given time to work. Longterm usage is bad period, and not worth the risk.

-Is it possible to get a corticoid dependency during the first course of steroids? You cannot become addicted to steroids, like nicotine or opiods.
Steroid-dependence means your UC flare returns when you drop your steroid dosage, so dependent on a dose for minimal uc symptoms. I've been temporarily dependent on a dose of pred. It's frustrating and happens until other meds are used.

-would it be better to start with Imuran right away instead of taking prednisolone ? Imuran has the best results if started while on pred.

-is it a good idea to ask for cortisone enemas before.
cortisone enemas are fine for mild inflammation, but more moderate to severe inflammation will require much stronger oral steroids like pred.
As you can see, I feel lost - and depressed because I'm afraid of long-terme side effects of aggressive treatments. What would you recommend me?
I'd follow your doctor's advice. I'd go on pred and imuran,
hit it hard and early and beat that flare before things get worse and you suffer more than is necessary.

Posted 11/24/2017 1:59 PM (GMT 0)
you say your flares respond to Lialda - do you take Lialda daily or only when you flare ?
Posted 11/24/2017 2:15 PM (GMT 0)

TroubledTurds said...
you say your flares respond to Lialda - do you take Lialda daily or only when you flare ?

My flares USED to respond to Lialda. Since I take it daily (since the end of 2015), it's inefficient when I flare, probably because the body is used to it.
Posted 11/24/2017 2:20 PM (GMT 0)
Hello John,

thank you for your clear answers. How long is the first course of steroids usually? Did you gain a lot of weight? Did you suffer from insomnia? How long did it take to lose the weight gain?
I'm afraid of Imuran & co. So, I'll try to take only prednisone first...
Posted 11/24/2017 2:28 PM (GMT 0)

Benoît said...

TroubledTurds said...
you say your flares respond to Lialda - do you take Lialda daily or only when you flare ?

My flares USED to respond to Lialda. Since I take it daily (since the end of 2015), it's inefficient when I flare, probably because the body is used to it.



how much Lialda do you take per day ? are you using mesalamine enemas every day ?
Posted 11/24/2017 3:16 PM (GMT 0)

Benoît said...
Hello John,

thank you for your clear answers. How long is the first course of steroids usually?Varies wildy, but a 2 month course is somewhat common. Did you gain a lot of weight? I lost 17 pounds early in my flare and regained about 15 on pred (insatiable appetite).Did you suffer from insomnia? Yes but only at high doses 20-40mgsHow long did it take to lose the weight gain?It takes 4 months or so of responsible eating and excercise.

I'm afraid of Imuran & co. So, I'll try to take only prednisone first...Why are you afraid of imuran? I've been on 6mp, a sister medication, forv5 years now with no side effects.

Posted 11/24/2017 3:55 PM (GMT 0)
Uceris and entocort aren't exactly the same. Uceris will release later in the GI tract, which can be helpful for UCers. It's very similar, but there is a chance it may work for you.

As for being afraid to start 6mp or imuran, if you wait and take pred, it may end up prolonging your course because you will not be following a plan for maintenance. As for weight, I gained SO much on prednisone. I had lost a lot with all my flare ups, but I gained A LOT, very quickly, on pred. I weighed probably 30 pounds+ more than I normally do, and I couldn't get rid of the weight. it was an absolute nightmare. I am a very petite person and always have been, I literally looked like someone else. I had insomnia too, terrible irritability, depression, arthritic joints, high blood pressure, moon face... I looked awful.
Posted 11/24/2017 8:02 PM (GMT 0)

notsosicklygirl said...
Uceris and entocort aren't exactly the same. Uceris will release later in the GI tract, which can be helpful for UCers. It's very similar, but there is a chance it may work for you.

As for being afraid to start 6mp or imuran, if you wait and take pred, it may end up prolonging your course because you will not be following a plan for maintenance. As for weight, I gained SO much on prednisone. I had lost a lot with all my flare ups, but I gained A LOT, very quickly, on pred. I weighed probably 30 pounds+ more than I normally do, and I couldn't get rid of the weight. it was an absolute nightmare. I am a very petite person and always have been, I literally looked like someone else. I had insomnia too, terrible irritability, depression, arthritic joints, high blood pressure, moon face... I looked awful.

It sounds frightening! How did you get rid of that weight? So, if I understand you right: your advise is to skip prednisone and start directly with Imuran?

Here, we have only Entocort. Uceris is not available in my country...
Posted 11/24/2017 8:11 PM (GMT 0)

iPoop said...

Benoît said...
Hello John,

thank you for your clear answers. How long is the first course of steroids usually?Varies wildy, but a 2 month course is somewhat common. Did you gain a lot of weight? I lost 17 pounds early in my flare and regained about 15 on pred (insatiable appetite).Did you suffer from insomnia? Yes but only at high doses 20-40mgsHow long did it take to lose the weight gain?It takes 4 months or so of responsible eating and excercise.

I'm afraid of Imuran & co. So, I'll try to take only prednisone first...Why are you afraid of imuran? I've been on 6mp, a sister medication, forv5 years now with no side effects.

Well, 17 pounds lost, 15 gained, tha's a good balance ! smilewinkgrin
But I for myself have not lost weight because of the flare, so the result would be very imbalanced !

I'm afraid of Imuran because I read it can cause skin cancer, pancreatitis, lymphoma... I don't want to cure my UC and get a cancer from the cure. But my gastroenterologist says Imuran is safer than tnf alpha-blockers... So if need be, I'll accept Imuran but I'm not OK for tnf-alpha-blockers since she says there are a lot of side effects.
Posted 11/24/2017 8:16 PM (GMT 0)

TroubledTurds said...

Benoît said...

TroubledTurds said...
you say your flares respond to Lialda - do you take Lialda daily or only when you flare ?

My flares USED to respond to Lialda. Since I take it daily (since the end of 2015), it's inefficient when I flare, probably because the body is used to it.



how much Lialda do you take per day ? are you using mesalamine enemas every day ?

I take 2.4g of Lialda (oral). I have not started enemas yet because I find that depressing but I'll give them a try. How did you cure your pancolitis?
Posted 11/24/2017 8:23 PM (GMT 0)
Sounds like you've got a bit of a misconception on the actual odds of side effects on biologics or immunomodulators. Rare for both.

The Crohn's and Colitis Foundation of America has great risks versus benefits discussions on immunomodulators and biologics. I highly recommended giving them a watch/read. The odds of side effects are quite low for both:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 11/24/2017 8:58 PM (GMT 0)
up your lialda to 4.8g per day and get on some daily enemas - see if those changes help you avoid some of the meds you'd prefer not to take -

a short run of pred may also help -
Posted 11/24/2017 9:18 PM (GMT 0)
I am with troubled turd. I would try to avoid both if possible. You could ask about increasing Lialda to the max, and adding rectals. If you notice backsliding, definitely add imuran or 6mp quickly as they take a while to work. Don't allow your condition to decline. If things progress to a point where your symptoms make your life difficult, it can necessitate prednisone - but in my opinion, it's better to take imuran/6mp than pred if you're in the position that you have the ability to avoid the pred. At least those drugs are options for long-term treatment. Pred is a bandaid that buys you time until you find a long-term solution. In the best case, the maximum dose of mesalamine + rectals could get you into remission. I didn't realize you were only taking 2400mg daily.

I lost the pred weight in a variety of ways. I hiked 6+ miles up hill daily for a long time. That got me very toned, but ultimately i was still "stocky" compared to my natural figure. Eventually, I had a major flare up that required more drugs and pred, and I got sepsis from the drugs. After I came back from the dead, I had surgery for my UC, which was a very trying time. Throughout that time, the weight just fell off. I guess the drugs themselves were making me gain in weird places. Now I am off everything and back to being tiny. I am female so perhaps I wore the weight worse than a man might. I looked awful & I had a face full of acne.
Posted 11/24/2017 9:23 PM (GMT 0)

iPoop said...
Sounds like you've got a bit of a misconception on the actual odds of side effects on biologics or immunomodulators. Rare for both.

The Crohn's and Colitis Foundation of America has great risks versus benefits discussions on immunomodulators and biologics. I highly recommended giving them a watch/read. The odds of side effects are quite low for both:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Thank you for these informations. As a matter of fact, the risks seem to be limited.... but the chance of having UC is small too, and yet, we have it.

I think, I'd be less reluctant if I felt sick but except for the mucus in the 1st stool of the day and the joint pains, I don't feel sick. That's complicated!
Posted 11/25/2017 1:51 AM (GMT 0)
Hello Connor, Notsosicklygirl, TroubledTurds and John,

well, I've been reading for hours now about immunosuppressants, tnf alpha blockers etc.

I think the risks for lymphoma with immunosuppressants is well known and evaluated since Imuran etc. have been used for decades, but the use of tnf alpha blockers is so recent that only time will tell.

What still makes me reluctant after all this readings is that the risk is increased if you are a male, aged 50+... and I'm a 55 year-old male. So I'll definitely try everything before and accept the risks only if everything has failed.
Posted 11/25/2017 1:20 PM (GMT 0)

Benoît said...
Here is the situation:
I have always mucus in the first bm. Then, everything's OK, except for joint paints at the top of my legs. No blood, no abdominal pain.

My questions now:

-If the gastroenterologist wants to give me oral cortisone like prednisolone

So is mucus on your first poop and pain your only concerns? (If that's all you have then it's crazy to consider imuran OR prednisone, unless a colonoscopy said things were bad.)

How many times a day are you pooping? Is there any blood? Is there any urgency with your poops?
Posted 11/25/2017 2:09 PM (GMT 0)

iPoop said...

Benoît said...
Here is the situation:
I have always mucus in the first bm. Then, everything's OK, except for joint paints at the top of my legs. No blood, no abdominal pain.

My questions now:

-If the gastroenterologist wants to give me oral cortisone like prednisolone

So is mucus on your first poop and pain your only concerns? (If that's all you have then it's crazy to consider imuran OR prednisone, unless a colonoscopy said things were bad.)

How many times a day are you pooping? Is there any blood? Is there any urgency with your poops?

Hello John,

I'll have a colonoscopy in a couple of weeks. I poop 3 or 4 times a day, without blood. Mucus in the first stool. Urgency for the 1st stool. But last night I was so frightened by the things I read, that for the 1st time, I had several times mucus only this morning.

My biggest problem now is feeling depressed. Last night, I wanted to start with mesalamine enemas but I was so disheartened that I gave up.
Posted 11/25/2017 2:23 PM (GMT 0)

Connor77 said...
You could ask for Entyvio instead. It still carries risks but not to the same level as TNFa blockers.

I've been on E for 1.5 years now. The only time I feel cruddy is for a few days following the infusion and then I'm fine. Remicade gave me drug-induced lupus which was hell. I will never take a TNFa blocker again. Admittedly, my reaction was not common... but what I don't like about Remicade and its relatives is that they affect the whole body. At leasty Entyvio has mostly targeted action in the bowel.

I can't speak to Imuran as I've never taken it.

Connor77 said...
You could ask for Entyvio instead. It still carries risks but not to the same level as TNFa blockers.

I've been on E for 1.5 years now. The only time I feel cruddy is for a few days following the infusion and then I'm fine. Remicade gave me drug-induced lupus which was hell. I will never take a TNFa blocker again. Admittedly, my reaction was not common... but what I don't like about Remicade and its relatives is that they affect the whole body. At leasty Entyvio has mostly targeted action in the bowel.

I can't speak to Imuran as I've never taken it.

Hello Connor,

Thanks for telling me about Entivyo. I thought it was a tnf alpha blocker. It sounds interesting . I would have, if need be, to convice a gastroenterologist because here (in France) it can be prescribed only if tnf alpha blockers have failed.

Under your messages I read:

Diagnosed with mycobacterium avium paratuberculosis (MAP) September 2017

Which medicine caused that?
Posted 11/25/2017 2:54 PM (GMT 0)
3-4 bms a day without blood is likely mild inflammation. Treat with mild meds 1st, like enemas.

Take the enemas as prescribed and then wait until the colonoscopy. Rowasa/salofalk/pentasa enemas do work fast and might show results by then. You might just be able to skip the imuran and pred unless the colonoscopy is bad.

Tips for using meslamine/rowasa enemas:
  • When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  • Add extra Vaseline (petroleum jelly) to the tip of the enema.
  • Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  • Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  • Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  • Use one of the positions described in the instructions.
  • Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  • Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  • It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.
Posted 11/25/2017 3:17 PM (GMT 0)
Hello John,

It's really kind of you! I will follow your advice and tell you the result tomorrow smile, or at least how it was.

Benoît
Posted 11/26/2017 2:35 PM (GMT 0)
Hello John,

I've promised to tell you how it was with the enema.

After the 1st half of the bottle, I had to go to the toilets, but I could keep the rest of the bottle inside for 5 hours. So, not too bad for a beginning. smile
Posted Today 12:18 AM (GMT 0)
Hello,

here are the latest news. I've seen the gastroenterologist on Tuesday. She performed a rectoscopy & saw an inflammation of the rectum of 5 cm. She said one does not cure rectitis with Prednisone, but with mesalamine suppositories.
I was not very enthusiastic since I had this rectitis DESPITE mesalamine suppositories. I managed to get steroid enemas for 1 mont but I'm so lazy that maybe I'll give the suppositories a second chance smile

Benoît
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