Prednisone experiences?

[adugas]

Hi everyone...I'm new here, as I was just told I have Crohn's Disease yesterday. The disease isn't entirely new to me, my mother has had Crohn's for as long as I can remember. I don't know a heck of a lot about it, I just remember growing up that there were a ton of foods Mom couldn't/shouldn't have as a result.

I went in for a colonoscopy yesterday morning, and in recovery the doctor came out to chat with me which is when he said they had found the Crohn's. He wrote me a prescription to fill and told me to come see him in his office 4-6 weeks from now. So I went and had the prescriptions filled, and planned to start taking them today.

However, my mom called me last night to see how the procedure had gone, and when I advised I'd been diagnosed with Crohn's, she asked about the meds prescribed. I told her I had been given Prednisone, and she had absolutely nothing good to say about it. She even advised that she refuses to take it again after previous experiences (twice that I'm aware of). So I've been online this morning trying to find some info, and it doesn't sound like something I want to take.

There seems to be a lot of really negative side effects that seem very common and likely that I will experience. I'm hesitant to take it because I'm not even in bad shape right now. I've had the occasional bit of dull pain for 10-15 minutes at a time throughout the last few months, but it has been very limited.

I was hoping for some feedback from people who have taken Prednisone. What's more, I intend to call my doctor who prescribed it on Monday and schedule an appointment to discuss with him - I have no intention of taking it until he's discussed it with me. It seems like if I'm not really in any pain for now, why take such a negative drug?

(I should also add that he gave me a prescription for Salofalk, which is a 5-aminosalicylic acid - my understanding from the pharmacist was that it was a long-term drug to prevent flair ups?)

 

[tflock]

Prednisone can really help you feel better if you need it. It has many bad side effects, but almost all of them are not noticeable until you have been exposed to it for a long time. I was on it for 9 months and noticed many bad side effects. If you were on it for a month to three, it might not be that bad overall. I would imagine that almost everyone on this forum has been on pred at some point of their treatment, and that some are still on it today.

 

[Khads]

If your pain isnt that bad at the moment I would put of taking it for now. It really worked for me but that was when I had no other options and that way you can deal with the side effects. Put off taking it as long as you can, prednisone should be down the list of medications to take

 

[Mountaingem]

Yes, I agree with tflock...I was on prednisone contiuously for about 3 years before I started having the more severe side effects. I realized later that my doctor wasn't properly monitoring my side effects/condition, which led to the problems I had.

Prednisone is a miracle-worker for most of us;please don't be put off by what you read. It can really help you get your life back. In the long term, however, it's better to find other options.

 

[Rebecca85]

I was on it for about 3 months in total- starting at 30mg. For the first couple of weeks I was very hungry (which did lead to weight gain!) and also more emotional than normal. I started getting extra hair, but wasn't on it long enough for the hair to become really noticable. The side effects lessened as I tapered.

If you aren't having many symptoms, then discuss it with your doctor. He may have seen something during your colonoscopy that means he really wants you to take the pred. Or he may say to try the salofalk only first, and see what effect that has.

 

[robbo87]

I've been on it a few times, I'm currently on 10mg after tapering down from 40mg just before christmas. and i was reluctant to take it again but things would have gone far worse if i hadn't.

It will make you feel better in no time at all, for me it took literally a few days at the most for all my crohn's symptoms to go. But with that does come the side effects. you may get some of these, you may not its different for everyone, but i really struggled with sleeping, when on a high dose i could only manage an hour or 2 each night if i was lucky, now im on a lower dose however the lack of sleep has gone away.

You will get a ridiculous appetite and want to eat non stop, if you need to put weight on then this isnt a bad thing but you will notice you gain weight. aswell as the moon face but once your off pred this goes away.

Ive always found i can get really angry at times aswell as maybe a bit depressed whilst on pred, whether its caused by the lack of sleep or the drug i dont know but thats just my experience.

anyway like rebecca says, unless your in a bad way and having lots of trouble then i would discuss it further and see if theres anything else worth trying first.

hope this helps.

 

[Astra]

Yeah I agree, if it's a massive serious flare then consider Pred, it works immediately, but if you can manage without, then maybe the 5 ASA will suffice, for now.
I was on Prednisolone, not Prednisone, there is a difference.
I was amazed by the energy this med gave me, and I got all the side effects too, but if you can condition your mind set, and know that this is temporary and that side effects will pass once you come off it, and that it will heal you, then you won't be anxious, just go with the flow.
Give it a go, if you don't like it, come off it. Simple as that
xxx

 

[adugas]

Thanks for the information everyone. I'm definitely going to speak with my doctor before I start taking it. The little pain I've been having in the last two-three months is certainly manageable without taking such an invasive drug, so we'll see what he says.

He's prescribed me currently to take 50mg/day for three weeks, then wean me off by dropping 10mg/day for each week after that until I'm off...so by my calculation, that's 7 weeks. Is that a lengthy term to be on it from your experiences, or no? It, of course, seems very lengthy to me if I'm not going to be able to sleep and gain weight and have a moonface!

 

[ThanksP]

That seems like a fairly short time in my experience. Last time I was on Pred, it was for 6 months. Personally, I would take it, especially if only for that length of time. There can be damage being done to your intestines without you feeling a lot of pain. By the time you are feeling pain, it could be too far for a 5ASA to do a lot of help. I HATE Pred as most do, but if it works, it works. It's only temporary and it's better than moving up to stronger maintenance drugs (i.e. biologics, 6MP, etc) Obviously, talk to your doc about it, but he probably saw something in your colonoscopy that warranted the use of Prednisone.

 

[robbo87]

Yeah I agree, if it's a massive serious flare then consider Pred, it works immediately, but if you can manage without, then maybe the 5 ASA will suffice, for now.
I was on Prednisolone, not Prednisone, there is a difference.
I was amazed by the energy this med gave me, and I got all the side effects too, but if you can condition your mind set, and know that this is temporary and that side effects will pass once you come off it, and that it will heal you, then you won't be anxious, just go with the flow.
Give it a go, if you don't like it, come off it. Simple as that
xxx

I never realised there was a difference, i just thought it was americans spelling things differently...

I think its actually prednisolone that im taking not prednisone, whats the difference?

 

[Rebecca85]

Not much, one is a pro-drug meaning it gets converted into the other in the body. Can't remember which way round it is though. I think prednisolone is more common in the UK and prednisone elsewhere. Just to clarify, it was prednisolone that I took.

 

[Astra]

yeah that's right, prednisone is converted into prednisolone, and it seems that the Brits take the prednisolone.

From http://patients.uptodate.com/topic.asp?f…

"Prednisone and prednisolone — Prednisone, the most widely used glucocorticoid, is prednisolone with an 11-keto instead of an 11-beta-hydroxy group. It is an inactive drug precursor that must be converted to prednisolone in the liver to become biologically active. Other modifications of prednisolone have been used to produce other glucocorticoids with varying biologic potency. Addition of a 6-alpha-methyl group to prednisolone yields methylprednisolone, which is about five times more potent than cortisol."

From http://ratguide.com/meds/endocrine_hormo…

"Though prednisone and prednisolone are used in the same manner and equally as effective, they should not be confused with each other. Prednisone is activated by the liver into prednisolone. For this reason and because it is more easily absorbed, prednisolone is the drug of choice when hepatic disease or insufficiency is present."

As you may know, they are both intermediate strength synthetic corticosteroids. "Prednisone and prednisolone are synthetic members of the glucocorticoid class of hormones. They are an intermediate acting, broad antiinflammatory, medication. They have less activity than dexamethasone or betamethasone, but exhibit greater activity than hydrocortisone."

I have posted somewhere on here about how the side effects are different, in that they seem worse with prednisone, with psychosis being a major side effect. I think, somehow the conversion in the liver exacerbates the side effects?

 

[adugas]

So I was able to speak with my doctor this morning and got some good news - I don't have to take the Prednisone! Apparently he only prescribed it because he thought I was still in a good deal of pain. When I advised that I'm mostly pain free these days, he told me not to bother taking it and just to take the Salofalk, and go see him in 6 weeks to follow up. Woohoo! He also mentioned that my Crohn's (for now anyway) is very mild and minimal...just a small patch right at the end of my intestine, and an even smaller irritated patch (he said like 1cm in size) in another spot.

 

[Rebecca85]

Well that's good news! Hopefully with only having a little bit of inflammation, the Salofalk will be enough to keep it under control.