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Posted 8/13/2014 6:06 AM (GMT 0)
I've been on prednisone since early February this year, from about 40mg and been trying to taper down by 5mg every 1-2 weeks (as ordered by my specialist) but every time I get down to 5mg I have a huge flare and have to spend a week or so in hospital.
From a lot of your posts I can see that everyone is trying to get off pred ASAP and I'm wondering why?
Is it bad for you? Does it have bad side affects?
I don't really understand a lot of things about medications for UC because I'm only 14 and most of it goes in one ear and out the other :s

Thanks in advance :) x
Posted 8/13/2014 8:15 AM (GMT 0)
Yes, it's very bad for you and has bad side effects. I'm surprised you haven't noticed any having been on it since February. You only have to read the leaflet to see what it causes. There are long term as well as immediate side effects which you need to be careful of, pred destroys your body. Especially as you're not an adult yet, you should be looking to get off it quickly as it stunts your growth.

Yeah it's confusing for everyone to get their heads around these medications at first, it's a lot to take in. It's easier to understand personal stories instead of reading a label, so I suggest you use the search bar at the top to see what others have been through.

Hope you get a better maintenance plan in place soon.
Posted 8/13/2014 12:07 PM (GMT 0)
Longterm usage of prednisone is bad. What is longterm or too long? That is subjective and a lively debate. What is agreed upon is be on pred no longer then is necessary to get tour uc under control. Why? Longterm usage of pred can cause osteoporosis, glaucoma, diabetes, and other such irreversible side effects. I did a full year on pred, I was pred-dependent, until my gi and I found the right mix of meds to get my uc under control. It sounds like you are pred-dependent as well. You need the right uc maintenance meds before you can successfully taper off of pred. You need higher dosages of your,current uc meds if you are not already at the max dosages. Or you need stronger meds, climb further up the uc medication ladder. Uc can be an aggressive disease and you need to therefore be aggressive in treating uc with medication. Good luck,
Posted 8/13/2014 12:11 PM (GMT 0)

malaika said...
Yes, it's very bad for you and has bad side effects. I'm surprised you haven't noticed any having been on it since February. You only have to read the leaflet to see what it causes. There are long term as well as immediate side effects which you need to be careful of, pred destroys your body. Especially as you're not an adult yet, you should be looking to get off it quickly as it stunts your growth.

Yeah it's confusing for everyone to get their heads around these medications at first, it's a lot to take in. It's easier to understand personal stories instead of reading a label, so I suggest you use the search bar at the top to see what others have been through.

Hope you get a better maintenance plan in place soon.

the only things I've noticed is increased appetite, weight gain and very sore eyes (I've had them checked, it's nothing serious), also a few pimples but that could be from anything.
Posted 8/13/2014 12:13 PM (GMT 0)

iPoop said...
Longterm usage of prednisone is bad. What is longterm or too long? That is subjective and a lively debate. What is agreed upon is be on pred no longer then is necessary to get tour uc under control. Why? Longterm usage of pred can cause osteoporosis, glaucoma, diabetes, and other such irreversible side effects. I did a full year on pred, I was pred-dependent, until my gi and I found the right mix of meds to get my uc under control. It sounds like you are pred-dependent as well. You need the right uc maintenance meds before you can successfully taper off of pred. You need higher dosages of your,current uc meds if you are not already at the max dosages. Or you need stronger meds, climb further up the uc medication ladder. Uc can be an aggressive disease and you need to therefore be aggressive in treating uc with medication. Good luck,

thank you :) I've just started infliximab transfusions and I'm currently on 6mp and allopurinol but I have to have very low doses because it affects my white blood cell count and makes me feel really unwell, so I think my doctor is looking at getting me off of that if the infliximab works :)
Posted 8/13/2014 12:18 PM (GMT 0)
Infliximab/remicade worked well for me and I hope it does for you as well. In fact, remi allowed me to finally kick pred to the curb. If you are feeling unwell, I would blame allopurinal as that can cause nausea; try taking it right before bed rathar then in the morning.
Posted 8/13/2014 12:54 PM (GMT 0)
hey ej - pred, like uc in general, affects everyone differently, in terms of side effects, both short term and long -

regardless of how you're dealing with it today, the future potential for damage cannot be overlooked - your plan should be to find another option as soon as possible - hopefully as the poop man said, the remi will kick in a give you your life back without pred -

good luck
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