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Tapering off of Pred

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Posted 7/16/2013 6:03 PM (GMT 0)
I was in the hospital last week for 3 days on IV steroids.  When I got home, my doctor had me on 40MG of Pred the first week and taper down by 10 every week.  I'm on week 2 now and at 30 which is my third day down from 40 and I am finding it hard to focus.  My head feels like it's swimming and my eyes are everywhere. 

I am trying to explain this to my family but my wife doesn't get it what these drugs do.  She thinks that I'm over reacting and that I need to toughen up.  It's so frustrating. 

 

Posted 7/16/2013 6:13 PM (GMT 0)
Always consult the doc on stuff like this obviously... but I've always been instructed to taper Prednisone by 5mg per week to avoid any withdrawal or harsh adjustment of any kind.
Posted 7/16/2013 6:18 PM (GMT 0)
Doctor is the one that wanted me to cut by 10mg per week. I recommened 5mg and he wants me off it ASAP. Doing my best to get by!
Posted 7/16/2013 6:27 PM (GMT 0)
Do you have a blood pressure machine at home to see if your pressure's either high or low?

I think you should call your doctor if your symptoms persist, and see if you can taper a bit more slowly in smaller increments

Do you have steroid enemas? Maybe a bit of a boost from them can help your taper....

Hope it's not something you need to deal with through the whole taper, and that your wife gets a grip of herself during this process.  It's unfortunate she's not wanting to understand what's happening..

q
Posted 7/16/2013 6:27 PM (GMT 0)
Good to know - I see my GI this afternoon, hopefully he will be having me start tapering off the pred. I'll press for 5mg decrements.
Posted 7/16/2013 6:36 PM (GMT 0)
I'm taking Canasa morning and night. I did NOT respond well to Rowasa. It gave me massive diarhea and I did not like it at all.

Next tuesday is my second loading dose of Humira (4 shots last tuesday, skip a week and then do 2 shots) and I hope it works. I loved being on Remicade and was in complete remission but it just stopped working. My antibody test said that it was not as effective as it was before. My doc felt that we could have tried to stick on Remicade with more dose and frequency but in his experience switching to Humira usually works better.

If I still feel weird tomorrow I will call him about the predisone taper. As for my wife, I don't know what to say. I've been sick off and on now for 4 years. I have to imagine it weighs on her and this is how she deals with it.
Posted 7/17/2013 2:31 AM (GMT 0)
After my one-week hospitalization, I also was told to go down by 5 mg/week. Ha! It took me 7 months to taper from 40 mg of prednisone. I hated every minute of it but I was more afraid of flaring again than being on the Pred for an extra month or two.

I took detailed notes on my condition after ever taper. If I felt bad, or my symptoms got worse, I would go back up for a few days or a week.

If you have to, you can get Pred in 1 mg tablets. Sometimes I went down by 1 mg/week.

There are lots of posts here about tapering off pred and they were all more helpful that my GI doc.
The one that helped me the most suggested using licorice tea and celtic sea salt.

In my experience, doctors know nothing about tapering Pred.
Posted 7/17/2013 12:07 PM (GMT 0)
Personally, 10 mg steps are too big for me below 30 mg. I feel a lot better if I do 5 mg steps. I have a hard time making it through a work day if I'm going too fast.

Do you have any procedures coming up, or any other reason your doctor needs you off of steroids? Tapering a little too quickly is better than just stopping.
Posted 7/17/2013 12:27 PM (GMT 0)
What are the side effects of tapering off pred too quickly? I've seen more than one mention that coming off pred is hellish, but in what ways?
Posted 7/17/2013 12:31 PM (GMT 0)
I think your wife needs a couple helpings of a size 12 tony llama enema !
Posted 7/17/2013 12:33 PM (GMT 0)
For me, it is fatigue and brain fog. I also got breakthrough bleeding when I was tapering budesonide.


"Weakness, fatigue, decreased appetite, weight loss, nausea, vomiting, diarrhea (which can lead to fluid and electrolyte abnormalities), and abdominal pain are common. Blood pressure can become too low, leading to dizziness or fainting. Blood sugar levels may drop. Women also may note menstrual changes. Less often, joint pain, muscle aches, fever, mental changes, or elevations of calcium may be noted. Decrease in gastrointestinal contractions can occur, leading to dilation of the intestine (ileus)..."
Posted 7/17/2013 12:50 PM (GMT 0)
Awesome, looking forward to it!
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