Scared to go off Prednisone

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Jen77
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Date Joined Mar 2006
Total Posts : 2688
   Posted 7/7/2008 2:54 PM (GMT -7)   
So next week will be my last week tapering down. I should be thrilled right? Well, part of me is. I can get rid of this moon face, and lose the pounds I packed on. Not to mention these awful leg cramps I've been getting. But part of me is scared. So far I haven't flared up again, but I feel like I'm just waiting for it to happen again. Especially the odd swelling of my lip and thumb that I had. Seems like I'm always checking out my lips to see that they look normal, or comparing fingers to see if they look swollen. The lower I go on the pred, the more I worry about these things. I can drive myself bonkers, and everyone around me too! I'd like to say not worry about things that may never happen again, or that I can't control. But easier said then done.
 
I know that's just the way it goes with Crohn's. We have no idea when it's going to rear it's ugly head again, or even if sometimes it's doing damage to us and we don't know it yet. I guess I'm just having a hard time dealing with the uncertainty right now. I'm the type of person who likes control, and with this I always feel like I have none (because well, I don't! LOL). Anyone else feel that way from time to time? I'm hoping once I'm off the pred for a while, and if things go well I'll be able to relax again about it (until next time of course!).
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 10 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/7/2008 3:09 PM (GMT -7)   
Jen, I felt the same way coming off prednisone espescially since I tried it once and did flare again before even getting off the pred. But the second time I had no problems the maintence meds had kicked in and I did well with out the pred. One of the things that helped me (and I don't know if you have this luxury) in my rhuemys office pred scripts come with refills. So I filled an extra refill and I carry it with me (I have only been off for four weeks). If I need it its right there no waiting. That makes me feel much more in control.
I would make sure I was tapering nice and slow and just try to relax if the symptoms haven't come back yet they may not come back at all, if they do you can call your doc and ask to go back to the last dose you felt good on. Most docs will go for that unless you have other health concerns that make it a bad idea.
Sj

Jen77
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Date Joined Mar 2006
Total Posts : 2688
   Posted 7/7/2008 4:09 PM (GMT -7)   
Good to know that feeling is normal Sj! I actually do have one refill on my pred still. So that is comforting, if something were to happen. I still think I'll actually have quite a bit left over in this bottle that I have at home too. That does help. But I worry since I'm just going back to just being on Asacol for maintence. I hope it continues to be enough like it was before. Just would like to go back in to a nice lonnngggg remission!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/7/2008 5:15 PM (GMT -7)   
(((Hugs)))) I will say a prayer that everything will be ok!!!! Think positive!!! :-)
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 7/7/2008 5:51 PM (GMT -7)   
Hi Jennifer,
I can relate to being scared as well. I have been on the dreaded pred for five straight long years and am slowly tapering down 1mg a month. My fears are that I think the pred makes me have a 'normal' persons energy levels and without it I wont function so well. So far I cant taper past 8mg so Im not sure I will ever be free from it anyway.
Im also scared that if I can come off it I will flare badly enough to need it again and then restart the vicious cycle again. Not much help to you though but know I understand your fear.
Joanne

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 7/7/2008 6:58 PM (GMT -7)   
Well tonight I was rubbing my eye, it was itching like mad. It felt funny afterwards, and sure enough part of it swelled up on me. Don't know if that's allergy related (kinda sounds like it since it was so itchy!), or here we go again. Down to 5 mg, and the weird swelling starts up! That's what happened in May, weird swelling, then the stomach parts kicked in of the flare. That has been the worse part for me. I can handle my typical stomach stuff, but this swelling just freaks me out. :( Took a benedryl, and we'll see where this goes. May have to call the doc tomorrow and go back up on the pred if it all continues.

Worries me because these swellings don't seem all that common with everyone else. Don't really see a lot of people saying their lip swells with a flare. My hand and thumb could be joint related swelling I suppose. But why do I get some weird rare complication with flares? Geesh!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).

Post Edited (Jen77) : 7/7/2008 8:10:00 PM (GMT-6)

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