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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Pred - How does long term damage occur?


09-07-2011, 07:12 AM   #1
Ian
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Pred - How does long term damage occur?

I'm curious about how long term damage occurs with this drug.

I've personally been on it a fair number of times over the past few years (always with a strong calcium supplement), and have never suffered any serious side effects - just the practically unavoidable weight gain/moon face and spots - all of which goes away once I'm off it. I have my bones checked on my blood tests, and glucose levels monitored, and they're always fine. I should also mention I've never been on it consistently (I know some people have been stuck on varying doses for years with no break). I always run a course of a few months, then get some time off for it to work out of my system before having to start again.

So how does long term damage occur exactly? Should one be able to notice a steady decline in bone density and glucose stability, or does it always LOOK like everything's fine and then suddenly one dose turns out to be the the straw that breaks the camel's back and it quickly all goes to hell? I only ask because my doctors have become SO against it for me, but this seems to be because of the general stigma it has rather than basing its suitability for patients on an individual basis.
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Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
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Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
09-07-2011, 11:59 AM   #2
littlemissh
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Hi Ian,
Blood tests don't really check your bones. To be sure they are ok then you need a DEXA scan which looks at your bone density. Its easy to do and harmless.

Steroids cause the most problems when used for more than 3-4 months.
If you are on longer than that you should be on calcium/vit d and also a biphosphonate drug eg alendronate which you take one tab weekly. (also monthly tabs but more costly so not prescribed in uk)
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09-07-2011, 12:00 PM   #3
tiloah
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Unfortunately I can't answer how the damage shows up. Though I would guess for some people it's gradual and for others it's more immediate (that's helpful, eh?).

When I was diagnosed, my GI told me that Pred is not considered a long term option because the patient always eventually has a (serious) adverse reaction. I believe he was referring to either high blood pressure, glucose issues, or bone density loss. Keep in mind that whenever a doctor prescribes anything, that person does a risks versus benefits analysis. In your case they may not have seen any adverse reaction yet, but since you've used it "so much" at this point they are probably worried it could happen soon. They may feel the benefit you'd see wouldn't justify the risk. They might even be worried that your frequent exposure could make you steroid dependent.

Have you been doing well? Are you asking because you would like to be back on Pred? Is it possible your docs think you are doing too well at the moment to consider it, especially given how many times you've taken it? At this point they might want to save prescribing it for when you're in real bad shape. Are they hoping one of the other drugs you're on will get a "chance" first?
09-07-2011, 04:04 PM   #4
Ian
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Thanks for the replies.

On my blood tests they always check the 'bone' box. I've never really been sure what it measured but assumed it was calcium levels or something? Maybe not. Yeah I've heard DEXA scans, never had one though. I take a calcium with vit D supplement every time I'm on Pred, not matter how long or short the course, to be safe.

I have been doing well recently after a terrible flare, backed up by a colonoscopy in July (no activity, all healed). I was on Pred from Feb through to the end of May, and have been steroid free for just over 3 months and thought the Humira and 6MP were holding me. However, a few days ago a few niggly symptoms began and haven't subsided (although they've yet to get worse). This makes me question if the Humira and 6MP have EVER worked. It's possible it was the Pred doing all the work, since I've broken through so quickly. Having used Infliximab before, I'm basically out of medicinal options (can't get Cimzia in the UK) - except for Pred, which is the only thing that seems to work (if I take it before I get VERY ill). Given my tolerance of the drug and the lack of side effects I've experienced so far, I'd happily treat my disease with say 2 courses of Pred per year (getting a few months remission after each one is completed) until something better comes along, if that was allowed. I guess I'm trying to find out if I could be monitored and if/when problems began to slowly present themselves, I could then admit defeat with the steroids - but until then, keep using them. I guess if problems can suddenly hit you out of nowhere, this is has far more a risk. Thatís why Iím asking really.

Either way, I know it's not something my doctors will go for. They would rather remove my colon than let me use steroids, even though they've never caused me any problems so far. But a recent MRI revealed some mild inflammation at the end of my small bowel. While it was confined to my colon, I was told I had something like an 80% chance of a permanent remission if I had it removed, but if it's already migrated to the small bowel, I fear it would just continue to eat away at the guts I have left - and what would they use to treat it since nothing else works? PRED! You see what I'm saying lol.
09-07-2011, 04:26 PM   #5
archie
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You could request a bone density scan to see if you have the start of bone thinning it might help answer your question. What dose are you on? You seem young so I suppose the doc is worried about the longterm effects of using it which most likely would be osteoporosis.
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09-07-2011, 04:30 PM   #6
tiloah
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Have you ever been on Entocort?

Prednisone is not a maintenance medication and should not be used as such. It is intended to treat acute flares and get you to a place where the other drugs can start doing their thing. You should discuss your options with your GI. I wouldn't give up on the Humira and 6MP so quickly, or the other options out there.

The fact that your inflammation returned after you discontinued the Prednisone could mean your disease is already steroid dependent, which is another reason to avoid it in the future.

What symptoms are you having right now? If as you say Prednisone may be your "only option" they may want to hold off on giving that to you as long as they can so it stays a viable emergency option. If your symptoms aren't particularly bad they're probably hoping the drugs you're on right now will start working better or that your situation is "livable" until it worsens.

Prednisone works really well and can make us feel a lot better, but it's a short term solution. There are some people who end up on it for very long stretches of time because they can't go off of it, but that's definitely a situation you want to try to avoid.

I hope the Humira and 6 MP start doing the trick for you. How often are taking each of them?
09-07-2011, 06:48 PM   #7
Ian
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archie,

That's kind of what I meant - would a DEXA scan show the beginnings of slow, progressive bone thinning (at which point you can deem the drug unsafe), or could a scan show everything is fine and then you take another course and suddenly you're all brittle and breaking bones all the time? Like, can the long term effects suddenly take you by surprise or, with sufficient monitoring, can you see the warning signs before things get too bad?
I'm not on Pred currently, been off for just over 3 months. I started at 40mg in the beginning of Feb and did a slow taper (slow for me, anyway) that finished at the end of May. I'm 25 so I certainly understand their concerns about the long term effects.

diesanduhr,

I've never been on Entocort, no. I only JUST found out on Friday about this mild inflam in the end of the small bowel. My disease began as proctosigmoiditis (just an inflamed rectum and sigmoid) and worked it's way up over the years, so Entocort was never suitable before because it's for the TI/ceacum area I think?

I take 100mg of 6MP daily (it was upped from 75mg around 2months ago - been on 75mg for over a year), and Humira weekly. I've been on the Humira since Jan and been weekly since Feb. We introduced Pred because I was getting sick too fast to wait for Humira to kick in. Once I finished my taper at the end of May and symptoms didn't return (and the scope showed complete healing) it was assumed the combination therapy was holding me, but the last few days I've had some mild discomfort/bloatedness and some mucus with some traces of blood with my b/ms, which makes me wonder if I was just in a temporary Pred-induced remission that has now come to an end. I may be jumping the gun slightly but I don't tend to get temporary bouts of mild symptoms - it's usually the beginning of a flare and just gets progressively worse without intervention. And the only intervention I have besides surgery is Pred. Just planning ahead really lol. This is certainly liveable don't get me wrong, but I doubt the symptoms will stay mild for long. I only recently got well again and it feels wonderful - I really don't want to be slipping already .

Don't get me wrong, I don't WANT to take steroids, and my doctors don't want me to either, for good reasons. But if it's that or be sick, what do you do? I'm trying to work out if doing courses of the drug with healthy gaps between each one has the same potential long term effects that being on it constantly with no restbite has. I can always get off it no problem, but the need to go back on tends to arise shortly after.
While it's mild I plan to experiment with supplements and diet to see if I can quiet things down that way - I don't expect much from this approach but it has the best shot of working while the disease isn't raging.

Thanks for the input guys .
09-07-2011, 11:37 PM   #8
archie
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Hi try reading this it might help you it suggests there's several contributing factors for osteoporosis eg unable to absorb calcium, crohns disease,
Age etc and longterm pred, pred over 3 months is considered long-term,, it also suggests it is a gradual process over time unless injury causes it which is different. Yes a dexa scan would show the beginnings of it eg osteopenia. Hope this is of some help.

http://www.patient.co.uk/health/Prev...teoporosis.htm
09-08-2011, 12:03 PM   #9
tiloah
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I don't think anyone *wants* to take Prednisone. It's always a balance, "Is what it does for my IBD worth what it does to the rest of my body?" I do think taking doses with gaps will do less damage than taking a constant dose, but that doesn't mean it's not doing damage.

I asked about Entocort because it's supposedly not "systemic" and therefore a steroid you can take with less side effects... although if it doesn't treat the area where you have inflammation that's obviously not helpful.

I can always get off it no problem, but the need to go back on tends to arise shortly after.
This is especially concerning to me. It tells me that one, your maintenance regimen is not working well enough, and two, you may already be steroid dependent. If your maintenance medication isn't keeping you from having constant flares, you need to discuss that with your GI and see what your options are. You say you're out of options, but if nothing else there are clinical trials. I also wouldn't rule out the possibility of surgery, it's a valid option that has led to relief for a lot of people. Usually docs will try whatever drugs they can before considering this, however.

I'm sorry to hear the medication hasn't been working well for you. I hope you find something that works for you and can keep you off of the Pred for a longer amount of time. You deserve something that treats your disease better.
09-09-2011, 08:09 PM   #10
vickyhunter
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Hey Ian, sounds like you're having a rough time Really sorry to hear that

Just to give another opinion on steroids, my mum was on 10mg for 2 years non-stop and the docs didn't seem too bothered about that (despite her being in her 40's and a woman). In my opinion it's bad to be on them for that long though and it was pretty much because they couldn't find anything that worked for her until she begged and begged to be put on azathioprine - and that works for her at the mo so she's been off the steroids for about 3 years now

And then for me I was on steroids in Feb for a month, then in May for a month and now I'm on them again for a month. They say high dose for a short time frequently is better than low dose for a long time.

I'm thinking of getting a bone density scan too, it's just good to know what's happening and if there is any damage.

really hope you start to get on the mend! Crohn's is such a bitch
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09-26-2011, 01:00 PM   #11
Ian
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They say high dose for a short time frequently is better than low dose for a long time.
Is this what your doctors have said then? This is what I was trying to establish, really. Obviously, it's different for everyone but I'm looking for a general rule of thumb to determine if it's any more desirable to take regular, brief courses with gaps than to be on a lower dose long term. Neither option is desirable of course, but there aren't always a lot of options! Like I said, it seems like the only other solution is a non-curative colectomy (unless I have UC which they think is unlikely), and since I'm failing all the maintenance drug therapies, I'd only end up on Pred post surgery if/when I flared again anyway. Sure, my docs would be able to put me on Pred with a clear conscience if they'd tried to avoid it with surgery first, but if I have to be on steroids I'd at least rather keep my insides while doing it.
09-26-2011, 06:36 PM   #12
vickyhunter
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Yeah Ian, every doctor I've seen for the past 12 years has always said a high dose for a short period is much better than a low-medium dose for years. For example I think the general thing is about 1-3months of steroids starting at 30/40mg. My mum was on 5-10mg for 3 years which was ridiculous and docs have told her she shouldn't have been told to do that as it's really bad for your bones - but she recently had a bone density scan and was told her bones were great! Despite her having broken her metatarsal in her foot through just walking (must have weakened in some way!)

Hope this helped, hope you're taking care

xxxxxx
09-26-2011, 06:59 PM   #13
Ian
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Thanks Vicky, yeah that has helped, it's reassuring to know all of that - especially that not everyone experiences bone thinning and other nasty symptoms after long term use (I know it's a high risk but I guess you only ever hear the bad stories!). Good to hear your mum's bones are good despite receiving some poor medical advice. Sorry to hear about her foot though, even if it's unrelated to Pred, broken bones aren't fun!
09-28-2011, 06:45 PM   #14
LindaS
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Ian, one other thing you want to do is get regular eye exams. Predisone can cause eye problems as well.

I have had 2 DEXA scans. Both have shown osteopenia, but the second was worse than the first, so it seems that the predisone can cause slow declines.

Sorry you're having such a hard time.
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09-28-2011, 06:58 PM   #15
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hey i def agree with the calcium and vitamin D supplements. but i also take Fosamax (Alendronate) when on pred.
Unfortunatley i got every side effect possible whenever i took pred, mostly the uncommon ones. so i started entecort on my last flare and it was great. none of the weight gain or moon face!
Also make sure you have the pressure in your eyes checked frequently

Good luck
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