Update on the Prednisone Taper...

[slightlysilly]

So so so sorry I am not able to get on the board for much more than a moment or two to check... I have a bit of time now, and wanted to let people know of the situation I find myself in due to a "too fast" prednisone taper.

I started tapering off 5mg at a time down from 20mg each week... So Tuesday, 20mg per day, following Tuesday, 15mg, following Tuesday, 10mg... and so on.

By the time I got to zero prednisone I went into what is called adrenal crisis. My main symptom of that is that I fell asleep in the strangest of places, like right at my desk at work... just ... WHOMP... fell asleep. I went to see my GP and she did some blood work and found that my cortisol levels were dangerously low (I think I posted about this before somewhere so if you want to read about it, it's there.) Edited to add: Here's the link to that thread (thanks for the responses by the way!) http://www.crohnsforum.com/showthread.php?t=16374

Anyway, I went to see an Endocrinologist yesterday and he is putting me on a way slower taper... so I'm on 7.5mgs per week for three weeks right now, then I'm popping down to 5mgs for a month and then 4mgs for three weeks, then 3mgs, etc. until I'm done. Then I have to have a test done (forgive me, I don't know what it's called) to see if my cortisol levels are appropriate and if they rise and fall as they should with any human body.

I just wanted to kind of warn people, I guess, that tapering off of Prednisone too fast can be super dangerous. If you are tapering off prednisone and you feel unusually tired (despite perhaps having insomnia), please call your doctor and let them know. You might have to bump back up and taper more slowly. I was read the riot act for prednisone. It's a good drug, but not one to be messed with.

Anyway, I'm in good hands. I'm in the middle of a flare which is starting to clear up (I don't have any of the "icky" Crohn's symptoms, just pain which is a welcome thing at the moment) but I wanted to share my latest experience for anyone who has trouble getting off prednisone... I do have to say that I liked prednisone for what it did to clear up the inflammation, it really did work, but the side effects (especially the most recent stuff) was not worth it.. there's got to be some other way...

Best to everyone!

Cheers!

 

[Keona]

my doctor is talking about putting me on this and after all of the side effects, no wonder he is really hesitant.
Sounds like you have had a hard time tapering. To be honest, I never even knew the average person had cortisone levels...
I know someone who has the sleeping disease narcolepsy where he just falls asleep whenever...wherever.... wonder if that has to do with his cortisone levels (just curious...I am sure they know what they are doing).
wow.. I am glad they figured out what was wrong and was able to correct the issue...
I noticed you wrote "buckets of tylenol" I hope you get your liver checked often... I was talking a lot and they told me to stop because it is really hard on the liver (and more so if you drink alcohol on top of that).
take care and good luck with the rest of your taper!

 

[KWud]

Thanks for the advice Maura, I'm on 20mg now and tapering 5mg per week so I will keep an eye on my energy levels.

Hope you're well soon

Paula
x

 

[slightlysilly]

Keona- thanks for the advice about the liver. I probably take about 4 per day at differing times. I'll be sure to mention it to my doctor next time.

By the way, I in no way want to discourage anyone whose doctor wants to put them on prednisone. By golly, it really helped my inflammation come back down to earth... it certainly has its place. Just careful, careful with the stuff...that's all!

Cheers!

Cheers!

 

[Keona]

thanks Maura.. I wasn't just getting freaked out from your post... it is a collective freak out...lol..
I can see why my GI is taking his time now as the drug really does seem to be powerful. When I worked in ICU, I saw a woman whose skin easily torn and was a result of years and years of steroids. I don't know which one but you couldn't touch her or it would tear. Paper thin skin... scary stuff...

all the other side effects just really freak me out as well... moon face, eating everything in site, mood swings, insomnia, acne, am I missing anything??? .... the more I read about the drug, the more I am starting to appreciate my GI's thoughtfulness before putting me on it.
I hope your tapering is going better

 

[mkhopper]

Thanks for the heads up Maura. I'm tapering off of pred as well, 5mg per week. Just dropped from 35 to 30 last week and will be dropping to 25 tomorrow.

I did have an issue a few months ago after an obstruction where I tapered from 40mg to 30mg one week after being released from hospital and that backfired badly, so I went back up to 40 for about a month before backing down to 35 for another month and now I'm doing the 5mg per week drop. Keeping my fingers crossed that no issues come up.