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Prednisone tapering was the plan, now doc changes mind, help

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Posted 12/11/2007 10:44 PM (GMT 0)
Last time I saw my GI doc he advised me to taper off prednisone, i'm at 10mg now, on Friday 7.5mg and every Friday go down 2.5mg till i'm off it which is first week in Jan 2008.  My symptoms are still the same since he last told me to taper off it and now he's saying stay on when I get to 5mg of pred.  He increased my Imuran to 150mg from 75mg as he told me that will happen in about a month or so from starting.  Also blood work every 2 weeks now, soon to be once a month ;)

My family doc sees i'm not well on pred, i've been having sleepin issues, headaches, pain in my bones, and I really want off it.

Should I follow my old plan and come off it, and if the D comes back go back on pred? Or...?

These side effects happened before I went on Imuran and was only on pred at the time when they began btw.

Posted 12/12/2007 2:37 AM (GMT 0)

I am sorry you are going through this!  Call your dr and let him know what is going on.  I am tapering off Prednisone too, I am like everyone else who hates this drug.  As long as he knows the situation he will be better able to deal with anything that comes up. 

One question, you said you have pain in your bones?  That is how I feel in my back and no one else seems to have this problem, can you describe it?  I get back pain that feels like it is in my spine.

Posted 12/12/2007 2:38 AM (GMT 0)
i am down to 5mgs pred now (started steroids in septemeber) and my gi wanted to bring me back up to 20mgs because i am still having pain and the d has come back a couple times a week. i told him i would like to try being off of it for awhile, if my symptoms come back full force i would call and let him know. he agreed we need to work together as a team and is allowing me to come off of it for now. nasty stuff. it worked well in the beginning for the d, the side effects are rotten though!

good luck, i would ask if you can try coming off of it and see how you do. let us know how you do!
Posted 12/12/2007 4:01 AM (GMT 0)
I have bone pain including neck, fingers and low back, that is mainly why I went on pred. I also am down to 10 right now and can start taper as I feel the need. I am waiting for humira to peak. My rheumy says that I can stay on 5 if necessary. I already have cut down on my pain med, but I do go thru pred withdrawal every time I taper. I also had sleeping issues, benadryl can help.
Posted 12/12/2007 5:28 AM (GMT 0)
Thanks for the replies :)

@wednesday2007, the pain is in my lower to mid back, hands, and knees, never had this till I started pred, and it's hard to describe, it feels like its burning sometimes or like someone is piercing me, it really hurts sometimes

I will imform my GI doc when I call him next week, I won't be at 5mg until Dec 21st ;) Thanks again everyone!
Posted 12/12/2007 4:37 PM (GMT 0)
I wanted to come off pred too so my GI switched me to Entocort and it helped a lot. Can you ask yours if Entocort is an option? Good luck! Karen
Posted 12/12/2007 8:25 PM (GMT 0)
Been on Entocort before, it worked for about a yr and a bit and then stopped working, so he pulled me off it and got me on pred, and now Imuran for long term. It sucks I know, great suggestion tho ;) Thanks Karen

I'm hoping the side effects start to ween off as i'm now at 10mg, I heard some ppl here start to see them go once their around this mark.
Posted 12/13/2007 2:58 AM (GMT 0)
This is not an exact science, and I agree with dustspeck that you need to work together with your GI as a team. Try to have the doc explain his/her thinking about why you should stay on pred. and then together make an informed decision. In the end, its you who has to suffer the consequences of the medical decisions, not the doctor. If you decide to taper to get off, just go very slowly...it seems to work best that way. good luck!
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