Can I replace prednisone with Entocort

[Sparky]

Sorry to ask for urgent advice - I've been taking pred for 5 weeks now, tapered down to 10mg, stopped for 2 days, went back to 10mg on consultant advice to bridge the gap whilst Imuran starts to do its thing.

Side effects are increasing at a rate I can't handle - I was OK with the sweating, the dry skin, the raging thirst, even the moodswings, while horrible, were bearable.

Last 24 hours have been dreadful - I've cried all day, felt almost suicidal late this afternoon, really not in a good place.

Two questions - am I taking a risk by just stopping the pred? I had a psychotic episode on it several years ago, feels like this is where i'm going now. I can't remember what happened then - don't remember much about it tbh - I *think* I must have been told to just stop taking it.

Can I take Entocort (was on that until starting back on pred mid-June) tomorrow instead of pred? Will that be safer? I know I tolerate it, would that be better than just stopping the pred cold?

I don't think i'm being a wimp, was fully prepared for side-effects and have been watching out for the psychological effect increasing (as have my DH and close friends) - this is just way beyond what I think is right - seriously dark thoughts this afternoon, DH very anxious.

I can't talk to my doctor till Monday, but the way the side-effects have increased today is frightening. I know I'm going to have to deal with teh physical effects of stopping pred, I've done that before - just need to stop them messing with my head.

 

[katiesue1506]

I know you can not just stop the Prednisone, but I do not know whether the two are interchangable or not.

When I was on 60mg of Pred I had a weirdo episode like you explain... I didn't stop it, they just bumped me down in doses, however you are only on 10mg now so I'm not sure what to tell you. I would call a doc or ER and ask them. But don't just stop the pred... bad idea.

 

[saidinstouch]

I wouldnt recommend stopping pred from 10mg cold turkey. Your body I believe makes in the range of 3-5mg a day of its natural version, so any dose above that for over like 1-2 weeks will cause your body to stop making it and it is a VITAL VITAL VITAL compound to have. I think at 10mg your body might be able to jump start production, but your best bet is to do a fast taper from 10->5mg doing 3 days at 10 and maybe 5-7 days at 5 then you can get off it. Assuming you have crohns symptoms primarily in your terminal illeum, then yeah entocort in theory can work, however being that it isnt systemic, you cannot simply replace prednisone with it, you have to still taper the pred regardless.

Basically the protein that cortisol (the bodies version of prednisone) hits is important for causing the transcription of genes that do a ridiculous number of important things in the entire body. I'm doing my Ph.D work on the receptor and how glucocorticoids affect bone density. You don't want to mess with your life trying to get off this stuff sooner than is safe to do so. I know its rough, but you can get through the next day or two I hope. Try spreading the 10mg out morning and night or even 3 times a day if you have to to make it less drastic each time. Good luck and hope you're ok!

 

[Sparky]

thanks for the advice - I hadn't thought about splitting the dose tbh, I'll try that tomorrow and ring the consultant on Monday. No point in going to A&E - Saturday night, it'll be full of drunks - they'll just tell me to stick it out until Monday.

Sorry to be mardy - just feel appalling, so sorry for my DH who's been trying to deal with me all day. I knew entocort wasn't systemic, hence me querying it - just hoping I guess that maybe it was an option. It's feeling so bleak/despairing I can't handle - it's almost overwhelming.

 

[saidinstouch]

You're almost there though! Just remember, each day on pred always is a bit better than the last once you're in the swing of things, at least for me it is. Also I think the dose splitting will help a lot, I always split my pred in half no matter the dose until I'm down to 5mg when splitting is sorta silly cutting a 10mg tab into quarters. Also remember, if you taper too quickly you can get some of the same feelings as if you are on a high dose because your body is completely out of whack in how it regulates itself. So you could also be feeling the effects of being off it for those 2 days right now and maybe in another day or two it will pick up (hoping this is the case). If not, Monday is nearly here, especially for you over there in England.

 

[Sparky]

This has been really bad today - first time in 5 weeks that I've felt like I'm out of control. You might be right - could be the effects of being off it for 2 days. I just need to not feel like this, it's not like me to feel the need to post an urgent, looking for help type thread. I'll try splitting, as I said - fingers crossed it helps.

 

[soupdragon69]

Hey Sparky,

Sorry you are having such a rough time.

Prednisolone can cause psychotic episodes and mood swings and depression. Any dose can affect you as its what level impacts on you as an individual.

Saidinstouch is very right on the points made given you are over the 2wk time span they recommend it can be safely stopped quickly. From what I see you have been on pred over 5wks now so stopping dead is really not a good thing as already said.

As already said pred is systemic i.e it affects your whole body whereas entocort targets specific areas of the gut depending on the preparation composition and the route it is given.

I suffer from depression when on high doses of pred 50-60mg really badly and will sit at my GP's with the tears streaming down my face so he avoids giving such high doses to me if at all possible or only for a max of 5 days then start to taper.

I just about manage on 40mg downwards depression wise and find it very tough both when on it longer than 2wks and during the taper. So you are definately not alone!! ((hugs))

Please ensure you tell your GP the psychotic feelings, depression etc you have suffered AND your GI as both really need to know and it needs to be highlighted in your notes. They may also decide it is a drug to be avoided with you in future or use it in short bursts (mine are agreed to be in 5 day bursts initially when oral as it seems to impact on me more then a review as it sometimes is enough to settle things (depending on the cause) and allow other meds like antibiotics etc to kick in). Keep in mind my agreement is because I have pred for asthma, crohns and arthritis and because of all three I have either had IV or oral steroids in my system since last August with a total of about 6wks free of them (when you add it all up). So this is specifically tailored for my needs and it sounds like you need a think through too with both GP and GI for your own needs when you have a clear head and are off them. Hope that makes sense!

When I did 2.5wks in hospital summer 2007 there was myself and another girl in the bay who both sat propping each other up emotionally as we came off iv steroids and onto pred. We would sit there with the tears streaming down our faces for no apparent reason and the staff looked at us as though we were crackers. I remember on my last day being almost inconsolable because the phlebobomist used a normal need to take my blood tests. I had asked her to use a tiny needle called a butterfly as I was so badly bruised down my arms and it was painful. She told me to not be so childish when she in fact had said it was important to use the butterfly needle on me for those very reasons days before!!

So the least wee thing can trigger you Sparky. We all understand the feelings and how out of control you can feel and yet feel its never going to end.

It will end Sparky. Things will improve honey. Hang in there. Decrease as suggested this weekend. Talk to both your GI and GP this coming week. Keep us posted on how you are doing too ok?

Thinking of you and your hubby. ((hugs))

 

[kello82]

hey sparky
i agree with all that has been said above
my only other suggestion was that maybe there is an "on call" physician for your doctor's office? im pretty sure that many establishements do this so that there is always someone to contact, even if its not YOUR doc, he or she has the power to get in touch with yours if they validate that its a true emergency.
maybe this is a possibility or if you stick it out till monday make sure you ask your doctor what to do should something of this caliber occur again! they should be able to tell you who to call for help in the off hours
good luck sparky

 

[Sparky]

Thanks guys - spoke to the GI guy on Monday night, and after looking at the dose I'd been on, and duration, his view was that I just stop - I had another similar episode during the early hours of Monday morning, but I swung from severe depression to rage over a period of about 4 hours. Just horrible.

Back to Entocort, and fully expecting withdrawal symptoms - nothing yet, but I guess they'll come. On the plus side, my face is already less red, and I haven't cried today I could cope with all the physical side effects, but the mental ones were for me unbearable.

GI's told me that if the entocot doesn't keep things under control between now and when the Imuran starts to work he'll start me on infliximab - the plan was to keep that in reserve in the hope that Imuran will do the job, which I'd still like to follow, but it's good to know that if Entocort doesn't bridge the gap then it's there as an option.

Thanks for all your support/advice, it helped a lot when I was really low xx

 

[saidinstouch]

Good luck with that! I think the Entocort + Imuran will be beneficial to you, if you can wait the time it takes to have the Imuran become effective. Unfortunately for me I couldn't tolerate 6-MP and got incredibly sick and was told to not take those drugs again so I had to hop straight to the biologics. If you tolerate the Imuran though, this combo is fairly potent, especially if you have most of your symptoms in the terminal illeum. Good luck and keep us updated!

 

[Sparky]

Updating as it's useful for me (sort of a diary iykwim) - took 10mg on Monday and that was it, all done with pred for now. Lots of lovely muscle pain and headaches today. Struggling to concentrate too, and tired - but that could be because DH has woken me up at 5.30 two mornings running as he's incapable of getting up without hitting snooze several times! Mood is settling - still not quite right yet, but definitely less extreme. Headache is annoying though - nothing's helping to kill it, think I just need to get on with it and wait for it to go away. Hands and shoulders sore today - always the first thing to react.

Saidinstouch - Imuran worked brilliantly for me a few years ago, the idea is to drop the entocort once I'm sure that Imuran's taken over. My very lovely GI is primed and ready should I need infliximab to bridge the gap, hopefully I won't. I'd like to hang fire before I introduce anything else into this mix. He's very sweet though - he knows we've got our first 'proper' holiday in 5 years booked for 8th August, and is very concerned that I'll feel too rough to enjoy it - hence he's sorted out the funding for infliximab and will fit me in for my first infusion asap if I need it. Nice to know the option's there as a backup

 

[bigtruck]

hows things going now that you've been off the pred a few days? hope your feeling better,:smile: :smile:

 

[Sparky]

thanks for asking bigtruck, I feel remarkably OK all things considered. Still got fairly horrible muscle pain, particularly in my legs and a headache that just won't buzz off. can't decide if the headache's down to pred withdrawal or Imuran - either way it's not great as nothing seems to touch it. My mood's stabilising a little more every day - not quite back to normal yet, but not very far off. I'm a world away from the state I was in just a week ago!

So far, I haven't seen much increase in CD since stopping pred - I'm hoping it dealt with enough of the inflammation to let me stay fairly well for another week or so, by which time Entocort will be doing it's thing. Minor increase in gut symptoms today, but nothing I can't deal with. So all in all, things are good