Prednisone: good so far

[UnXmas]

I read so many prednisone horror stories before I started it. Now having done my time at the high dose I thought I'd report that's it's been positive overall. I ended up taking my other thread - "prednisone without side effects" - off topic and reporting the side effects I am and aren't getting on there.

I still have digestive problems from my non-IBD conditions (delayed gastric emptying causing fullness and rectal problems) which the pred couldn't address. I still have loose stool. But since a few days of beginning the pred I've had none of those days where you are back and fourth to the toilet all day long. I've had none of the days where I'm just uncomfortable in my stomach and cramping to the point I don't want to eat.

There have been side effects that are making me unhappy with my appearance - facial hair and greasier skin. But the side effects of how I'm feeling have actually been positive. I was sleeping loads before - illness made me so exhausted. Since starting pred I am notciably nearer to a normal person in terms of energy. I takes me a little longer to get to sleep - an hour or two, but no real problem with insomnia. I feel more awake in the day, stopped needing naps, and even though I am sleeping less I don't feel like I'm lacking sleep.

I'm almost tempted to say I don't want to taper but I can't be on it long term because of my bones. I am supposed to switch to an alternative soon, will find out at my next appointment. I had thought about asking whether it's possible to stay on a low dose of prenisone instead since it's making me feel better. Does anyone else do that?

Basically wanted to let people know that it's worth trying this medication, even though you read so much scary stuff about it. If it doesn't suit you you can come off it. It does help to be aware of the possible side effects and if you find yourself experiencing them maybe find ways to counteract them, but it's impossible to predict what you'll experience. I completely skipped some of the most common ones. It certainly doesn't make sense to worry too much in advance about side effects that may not end up being a problem for you. If you're recommended it, it won't necessarily be as bad as it sounds.

 

[Johnnysmom]

I agree!! My son felt immediately better while on Prednisone. The difference was amazing.

He had a few issues as he started to taper but nothing bad. I do completely sympathize and understand there are people who really have an awful time. But I think your right that it is worth a try!

I hope all goes well for you.

 

[UnXmas]

I'm glad your son had a good response too.

I'm realising that prednisone is having an effect on my mood as well. I'm finding myself in a good mood much of the time - but it has a kind of false feeling to it, perhaps because I'm aware it's from the med and not genuine. It's still a good thing - just a sense of "well being" I suppose, the increased energy and weird mood boost together.

 

[MoRymes]

Hey UnXmas,

I'm glad to hear you're getting some good results from prednisone! Reading about the side effects definitely can be scary. It's great that you're experiencing those to a minimal extent while still getting the benefit of the drug. For me, prednisone may be the next line of treatment (was first given Asacol with no relief, and just prescribed Entocort yesterday - so far, so good with this, but we'll see), so it's good to hear that not everyone suffers from the bad stuff.

Are you on any other meds? What's your doctor's plan for you once you taper off the pred? Where in your digestive system is your Crohn's concentrated?

I think it's worth bringing up to your doctor about keeping on a low dose for a little bit longer time if you're experiencing minimal side effects. If the Crohn's is in your ileum, it may be worth trying Entocort. I've read the bone loss for that is less of a concern as compared with pred. If not, maybe stay on the low dose pred for a bit longer and just keep a closer eye on your bones. Alternatively, taper off and see if your symptoms return. If they don't, great -- if they do, consider re-starting for a bit longer at a lower dose. (By the way, these are all totally just suggestions to bring up with your doctor to see what they say, and definitely not experienced advice or anything of the like.)

Keep us updated on how things pan out!

 

[UnXmas]

Thanks for the reply. I see my doctor in a couple of weeks I think to discuss what's next.

I already have osteoporosis - that's the problem. I'm already on treatment and have had dexa scans, but I'm starting at a point where risks shouldn't really be taken.

They found inflammation in my stomach and eosphagus on endoscopy, and I'm still waiting for further tests to confirm the extent of the illness. I've had previous rectal surgeries though, and although those were a few years ago, no inflammation was found in the large bowel back then. I have a specialist appointment in December, which as far as I know is when they will tell me what further testing is required.

Most of my other meds are for other conditions - mostly endocrine problems and osteoporosis. A lot of hormone meds and pain killers. I take domperidone to help appetite and nausea, but it doesn't really do much anymore. Tried every over-the-counter stomach medication there is, but immodium's the only one that really helps on a regular basis.

That was what was indicated at my last appointment, though I've found plans have changed before. I've learned I have to have a laid back attitude and take the medical process as it happens. This does not suit my natural character -I like to plan everything and stick to it, but the NHS and my doctors have other ideas sometimes!

 

[PatrickL]

I'd advise caution.. Prednisone is only a temporary solution, and shouldn't be considered as a long-term medication. When Pred was discovered it was thought to be a miracle drug. RA patients who couldn't get out of bed could bound up and down stairs on high doses. 5 years later they had osteoarthritis, hunchbacks, and never lived a normal day again. Over time the medical community adjusted use of Pred in treatment, learned a lot more about it, and that's why the warnings on it are so ominous. Long term Pred use will do irreversible damage to your body. I was on Pred for 4 months 2 winters ago, and to this day any bruises on my bones don't heal quickly, if at all, and I've had injuries to soft tissue that never would have happened in the past. I'd only ever take it for a week or so to calm a flare at this point in my life.

 

[UnXmas]

I'd advise caution.. Prednisone is only a temporary solution, and shouldn't be considered as a long-term medication. When Pred was discovered it was thought to be a miracle drug. RA patients who couldn't get out of bed could bound up and down stairs on high doses. 5 years later they had osteoarthritis, hunchbacks, and never lived a normal day again. Over time the medical community adjusted use of Pred in treatment, learned a lot more about it, and that's why the warnings on it are so ominous. Long term Pred use will do irreversible damage to your body. I was on Pred for 4 months 2 winters ago, and to this day any bruises on my bones don't heal quickly, if at all, and I've had injuries to soft tissue that never would have happened in the past. I'd only ever take it for a week or so to calm a flare at this point in my life.

Thankyou. I'm reminding myself that just because I feel good - or feel good now - doesn't mean there won't be negative consequences, perhaps later on (if I do continue it rather than tapering off completely) or even happening now without me noticing. I'm trying not to get distracted by thinking that the superficial things - hair growth - are the only negatives. And that I shouldn't confuse this pleasant boost in mood and energy and stomach problems with actual good health.

It is a bit disconcerting to feel better and know it's not necessarily a sign that my health isn't actually getting worse. :confused2:

But I'm monitoring everything and don't have long to wait until I have a number of doctors appointments, when I'll be able to get a better idea of how things really are and I'm sure they'll be doing actual tests to assess my health, so I won't have to rely on my own interpretation of symptoms as I'm doing at the moment.

Thanks again for the information and caution.

 

[asheroonie]

I've been on prednisone on and off my whole life for flares, and it really can be a miracle drug. But I agree it's only for short term use. I've been having one of the worst flares of my life for the past 5 months, and I've been on prednisone for a little over a month now (high dose IV solumedrol in the hospital for two weeks, followed by oral prednisone, which I'm tapering off of now). Usually when I'm on a quick round of steroids, I don't get super nasty side effects. But oh my god, I hate it right now!! AWFUL insomnia, anxiety, my heart feels like it's going to pound right out of my chest, blurry vision, difficulty concentrating, shaking, just generally feeling really confused/out of it, and my face is starting to get puffy which makes me feel really self-conscious I do enjoy having more energy and luckily I've been in a good mood (no mood swings!). But I am definitely ready to get off as soon as possible!

I hope you continue experiencing the good effects, and are off quick enough to avoid the bad ones!!

 

[UnXmas]

It would be so much easier if we could predict the results and side effects, wouldn't it?

I'm not on the same dose I started on anymore, and I'm starting to notice my legs are really achy. Possibly even weak. I'm underweight so I have weak muscles anyway, but now when I walk upstairs or uphill, it feels more difficult than usual.

asheroonie: I'm sorry you're suffering! Those sound terrible side effects to me. It's so difficult to assess and work out when this is a good or bad thing!

 

[asheroonie]

I'm the same way - I can't walk up stairs, it's so difficult! But I attribute that more to the fact that I was in the hospital/sitting on my butt for two weeks, haha. So I just need to rebuild all those muscles I plan on starting up with yoga again soon, so that should make a huge difference!

And thank you!! The thing is, I don't remember ever getting any of these side effects in the past But it has been a while since I've been on prednisone, so who knows. I'm dropping down to 15mg tomorrow, so I hope it makes a noticeable difference!

 

[UnXmas]

I'm the same way - I can't walk up stairs, it's so difficult! But I attribute that more to the fact that I was in the hospital/sitting on my butt for two weeks, haha. So I just need to rebuild all those muscles I plan on starting up with yoga again soon, so that should make a huge difference!

And thank you!! The thing is, I don't remember ever getting any of these side effects in the past But it has been a while since I've been on prednisone, so who knows. I'm dropping down to 15mg tomorrow, so I hope it makes a noticeable difference!

I think the fact that I was underweight and short of muscle in the first place is probably contributing - though I don't usually ache like this!

It makes it even more confusing that prednisone can cause different side effects, even in the same person.

Hope you feel better as you taper!

 

[UnXmas]

A bit further down the line and now tapering the dose and I'm realising how the effects come on over time. At first I thought this drug wasn't doing much! Now more and more effects and side effects are becoming evident.

I still have NO hunger and have lost weight. But
my weight has begun to redistribute: my face is puffing up (not in a way that's obvious because I'm skinny it acutally looks better) and my arms and legs seem to be losing muscle. So I am getting these quite typical side effects after all.

My digestive system has been SO much better, but then I have the odd day of major stomach discomfort. The hair growth is increasing and my moods are all over the place. I wake up at night and my mind is screaming for entertainment - I can't just doze peacefully anymore. One moment I wish I could go back to how things were pre-pred and the next I feel euphoric and so much better I wonder how I ever managed without it. That would be the mood swings, lol.

The differences between how I feel now and the posts I made soon after starting steroids have made me think again that a long time - months - on steroids could very easily have consequences for your health that could come on in the same gradual or subtle way. It's not as simple as taking a drug one day and seeing what happens.

I'm still really pleased with the effects of prednisone overall. I just wish it was a bit easier to handle.

 

[UnXmas]

I've been posting updates on a few of my old threads lately, and can't believe the difference I'm going to post now from when I originally started this thread!

After being on prednisone a while I hated it, even more than in my last update post to this thread. The worst was the way it effected me mentally. Over several weeks I developed horrible insomnia and restlessness and was unable to concentrate on anything. I did get some mild "euphoric" feelings, but even those felt fake and unnatural. I did have more energy physically, but I was wound up all the time. It did do what it was supposed to do, but I couldn't wait to get off it in the end.

So I guess the lesson I would suggest to everyone is that the side effects of prednisone can take a very long time to come on. I felt completely differently after a couple of months from how I'd felt having been on it a couple of weeks. I'd assumed that a couple of weeks would have been long enough for side effects to develop so I wasn't expecting the continuing changes.

So glad to be off it!

 

[AlliRuns]

For me the side effects on prednisone start almost right away, the insomnia does anyway. I didn't have many other effects.

 

[lsgs]

I was like you UnXmas, very little side effects at the start then it all became apparent later on. I'm down to 8mg at the moment on a very slow taper and I'm still gaining weight like hell even though I've cut right back on my intake. It has been a wonder drug for me, I've got my life and independence back even though the side effects are pretty awful. At high doses I developed a seriously impressive tremor which, as a dentist, meant work was sometimes impossible!

My rheumatologist wants to keep me on 5mg pred long term if I stay well at that dosage but my GI thought that was pretty dangerous, and more risky than immunosuppresion. So I don't know :-/