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I want to wean myself off the Prednisone

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Posted 5/28/2010 9:27 PM (GMT 0)
So I need advice since I'm going to go against my doctor's advice.  I still don't understand why I'm on the Pred when I feel like my body has built a resistance to it and it isn't doing anything for me.  My crohn's is like how it usually is, not completely horrible but everyday pain and bathroom annoyances.  I don't think the silly 10 mg of Pred is doing anything.  At least when I was on 20-40ish it raised my energy levels and stuff like that.

So, I left a message for my dr. telling him that I am aware what he is medically advising me to do but I want to go against it.  Unfortunately he won't be in the office til Tues or Wed, and I feel like it's so impossible to get in touch with them that by the time I finally get him on the phone it will be another 2 weeks! 

Right now I am alternating between 10 and 5mg a day.  For people who have had lots of experience with this (I don't remember what I did 8 years ago.) how do I do it the correct way?  Do I now go just to 5mg for a week and then that's it or do I then go to 2mg? (I remember my doctor saying something about that)...but that means I now would need to cut the pills into quarters? 

Any advice would be greatly appreciated :) I know it might be bad to go against my doctor's wishes, but he hasn't explained a good enough reason for me to stay on the drug, and I feel like it's better for my mental health to be off of it.  I'm tired of introducing myself to new people as "Hi, I'm Sara, sorry for my poofy face, I'm on steroids."  heh.  But yeah, even though I'm going against my doctors advice I still want to wean myself off correctly!

Posted 5/28/2010 9:44 PM (GMT 0)
Maybe you want to wait until you talk to your doc? However, how you taper depends on how long you've been on 10mg/day. If you want to reduce your chances for flaring then you should taper slowly. If I were in your shoes I might do 5mg/day for more than a week, maybe 2 weeks, then taper down to 2.5mg for 2 weeks. That's dragging it out, but better safe than sorry. I think that you might find that the pred is doing more for you than you think. If you get down to a certain level and start to flare, you will know and you might want to consider sticking with the 10mg/day. I feel for you. I've been there.
Posted 5/29/2010 5:43 AM (GMT 0)
As I'm sure you know, it's supposedly dangerous to just go cold turkey off Prednisone. I think the more gentle taper you can do, the better. My wife has RA and was on a very low dose for a long time. I think sometimes it can keep things in remission once the higher doses get you there.

Anyway, I understand where you are coming from. I have only been on it a few times, and while it works great, the side effects are sometimes just too much to handle. just be careful. Doctors don't have all the answers, and you need to do what you think is best for you. I don't think you are making a mistake by going against the doctors suggestions. You are getting as much info as you can, and are making an educated decision. I think any MD would be happy to have a patient that participates in their own health care as much as this.
Posted 5/29/2010 6:22 AM (GMT 0)
Sorry no way I'll give advise in this matter, it's just to dangerous. Please talk to your Dr. first, what's a few more days?
Posted 5/29/2010 2:46 PM (GMT 0)
I agree with Grandpato2, you need to talk to your doctor about this, as you could do yourself serious harm in not following your doctors orders.

Really sounds to me like you want off the Pred becuz you have moonface due to the Pred. I think you need to put your health first over your vanity. I wish you good luck, but I think you need to run this by your doc, not a bunch of Crohns patients on this forum. We are not medical professionals, just patients. JMHO
Posted 5/29/2010 2:56 PM (GMT 0)
Unfortunately, if used for more than a short course (a couple of months or so) steroids tend to lose their effectiveness, as you have found. You might ask your doctor about trying a course of total enteral nutrition (special liquid-formula diet used in place of regular food and beverages for a few weeks to induce remission). It can sometimes work when steroids have stopped working, and doesn't have the steroid side effects. If it works for you, then you can use smaller amounts of the liquid formula in conjunction with your regular diet to help maintain remission. Also, you could start it when you're tapering the steroids, to help prevent worsening symptoms during the taper. Just a thought.
Posted 5/29/2010 11:00 PM (GMT 0)
The thing about my doctor is I've asked him multiple times and he always rushes me and doesn't give me explanations and just says to simply stay on it without reason. But now that the Humira is being pushed back and who knows when I'll go on it (if ever) I can't stand it anymore.

Today I am getting guilt tripped by my friend because she is having a bbq and my ex and his (skinny) girlfriend is going to be there so I figured that I'm not going to go 'cause it will probably depress me. Maybe some may call it vanity but I do not want to be there and have him see me like this. I've deal with self esteem and weight issues my whole life and I'm generally okay with myself these days but not right now with the steroids in me. It's annoying that my friend can't understand why this might be a situation I might not want to put myself in, especially since I'm single, everyone these will be couples, including my ex, and I'll just be there by myself with a face that looks like a blowfish. (Meanwhile she's thin and gets hit on all the time and thinks she's fat for some reason, yet can't be understanding about this....ARGH!)

I'm not going to do it cold turkey, I think right now I'm just going to do 5 mg, I've been on 10 mg for weeks now, so I think that's safe...I just want to be done already.

And it won't be a few more days, my doctor's office is very nice but their phone system sucks. What will happen is I'll call Tues or Wed, leave a message. He'll call me but I'll miss the call, and it will be after office calling hours so I won't be able to call him right back. So we'll play telephone tag until eventually a few weeks later he'll finally get the memo but since I won't ever catch him on the phone he'll just say "Stay on it Sara, blablabla, it's doing something, yadah yadah"

I'm just bummed. And frustrated. And pissed.
Posted 5/29/2010 11:09 PM (GMT 0)
I'd go no lower than 5mg for now. and for a long time. frankly, it took me more than a year to taper off the stuff. I started to get Arthritis flares at that time, so right back on the stuff I was sent. I went down to 5, then 2.5..which I stayed at for over 8 months BTW. Every time i went lower I'd have rebound flares or at least a couple of symptoms.
These days, i only use tapers & short ones at that, of Pred. Its a Demon Bargain, that stuff. Sure, it works. But it carries its Price..
Just go slow, really slow..

Sincerely,
Matthew
Posted 5/30/2010 1:29 AM (GMT 0)
<Insert slew of curse words here> I knew I shouldn't have agreed to go on it in the first place! I swore after the first time that I would never go on it again but they getcha when you're down, sitting in the er exhausted and in pain and too tired to say no! darn those crafty doctors! heh...
Posted 5/30/2010 6:31 AM (GMT 0)
Ya know, second opinions are a very good thing. If you have the option of trying a different GI, I'd look into it.

I had a really difficult GI doctor once, and I only saw him 3 times before I'd had enough and found another. He would do similar things, didn't want to listen to me, just wanted me to do what he said and not have any opinions, complaints, issues, etc. Not a good place to be.

Your GI may very well be right, but it is YOUR health, not his, and there is NOTHING wrong with getting a second opinion. In fact, my current GI, who I really like, has twice now sent me to another GI to get a second opinion. He will be the first to admit that it's very easy to miss something and start heading in the wrong direction. If you are concerned about the side affects of prednisone then you need to talk about it with someone that will listen. The side effects are tough, I agree, and at 25 and single, you have a long life ahead of you and a lot of different concerns than some of us older folks. Do put your health first, but also don't forget to live life.
Posted 5/30/2010 6:04 PM (GMT 0)
You need to go slow when you hit 5mg a day.

If your g.i. doctor does not want to help you, then look in the yellow pages, and find an endocrinologist, they are the prednisone experts.

Take Care

Posted 5/30/2010 6:36 PM (GMT 0)
I was just being all grumpypants...I'm going to blame it on the steroids, haha. It's just frustrating when friends aren't understanding, or don't realize how having a different looking face might effect how you feel. And I don't like when some placate me and tell me I look the same when I definitely do not. Oh well. This too shall pass, right? It's funny how I complain more about the steroid stuff than the pain. I guess I'm just used to being in pain all day, that's pretty much normal for me. I just need to suck it up.

Thank you all for listening and for the advice. I'm going to stick it out on 5mg for awhile until I talk to my GI.
Posted 5/30/2010 9:38 PM (GMT 0)
Prednisone does that, and no matter what people say, they understand. I dislike it very much, to say the least. I don't fault you for your feelings on this.

Go get 'em, and I hope that you can get your GI to listen to you.
Posted 5/31/2010 8:54 AM (GMT 0)
when I tapered down from the preds I tapered down to 5mg and stayed at that level for atleast 10 days before coming of it.I dont think you have to taper down lower than 5mg to come of it,or atleast I never have.
But I would speak to your doctor first to make sure it is ok for you to come off it.
I know when I've tapered down,sometimes I start flaring up again and end up going back to the full dose again.
Good luck and hope you can come of!
Posted 5/31/2010 6:33 PM (GMT 0)
I have a love/hate relationship with Prednisone. I like it because it makes me feel like a million bucks (some of the times) but I hate the side effects.

Please go slow on the tapering. I've heard of people having heart attacks because they stopped taking Pred too quickly.

And like others said, don't be afraid to get a second opinion. I have fired more than 1 GI doc in my life.

Tim
Posted 6/6/2010 4:02 PM (GMT 0)
I was on a 10 mg maintenance dose for about four years. I tried several times to get off of it without professional guidance and failed. Your adrenal glands stop producing the steriod (cortisol) naturally so it is critical to taper slowly so that your body can start producing it naturally. I was advised to follow this plan:

7.5 mg for 1 month
5 mg for 1 month
then decrease dosage by .5 mg every 2 weeks
at 4mg a blood test to check cortisol levels to ensure that your body has started producing the steroid naturally again

following this regimen has worked for me however, I strongly encourage you to get the support of either your GI or family doctor so that you can be properly monitored through the process. there are serious dangers associated with going about this the wrong way. I once ended up in ICU after adrenal failure. I had 7 seizures and a spinal tap as a result.

please speak candidly with your doctor.
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