Predinsone withdrawal - question

[Juben]

predinsone withdrawal - question

I have been on pred since July 2009... as much as 40mg daily and the least I got down to was 10mg then had a flare and pumped it back up. I've been on 20 mg for the past few months, had surgery Wed the 17th, and on the day I left the hospital my surgeon told me to take 10 mg for 3 days then stop completely. Today is my 3rd day at 10 mg and I have been waking up in the night with nervous energy (even after taking 2 tylenol PMs!), and I am feeling cold one minute then hot the next. My feet and hands remain very cold to the point that I have pulled out the heating pad to get warmed up. I am mostly very cold when everyone else is comfortable (it used to be the opposite while on the pred at high dose) Is this normal and how long can I expect this to go on? Thanks!

 

[Nic]

Sorry to hear you're having problems I'm not real sure what the withdrawl symptoms are, but I'm sure someone will be able to tell you. I would think that after being on it for so long that you should have had to taper off a little longer. I started mine in July 09 and was on it until Sept, I think, and I had a longer taper when I finally went off it, went all the way down to 5mg if I'm not mistaking. And each time I went down it was for a week.

Good luck and I hope you get feeling better soon!!

 

[Misty-Eyed]

Yeah I'm surprised they are taking you off them so quickly. I'd really call a doctor if I was you just check you over on the safe side. I think it would ease your mind more than anything.

 

[InkyStinky]

Hi Juben,

I'm also surprised that you are going off prednisone so quickly. I've been on it off and on multiple times over the years, and I've always tapered in 5mg increments, usually with two weeks between dose changes.

Have you seen this article from medicinenet? http://www.medicinenet.com/steroid_withdrawal/page3.htm

Here's an interesting thread from this forum: http://www.crohnsforum.com/showthread.php?t=5413

And do check with your doctor - the point of slowly tapering off pred, if I get this right, is to let your adrenal glands start working again, since they don't have to work while you're taking pred. So if you stop the pred suddenly it can cause a lot of problems (the medicinenet article says all this better!).

Sabrina

-----------------------------------
IBD since 1990 (currently diagnosed as Crohn’s)
Blood clots 12/2009 (DVT and bilateral PE)
Medicines:
Prednisone: 20mg/day (of please let me start tapering soon!)
6MP: 75mg/day
Trazodone: 100mg/night (because pred messes with my sleep)
Warfarin: 12.5mg/day (anticoagulant - because of blood clots)

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ from an old I Love Lucy episode.

 

[Astra]

yeah Juben

Im same as nic, not sure about the withdrawal symptoms, I'm only just tapering off now, down 5mg per week til zero is reached
but I was like you 4 weeks ago, really wired and cold hands, then hot, then cold, and hyper bloody ventalating! like I was on whizz (speed) it was horrible.
like Inky and Misty, I'd phone the doc, maybe you've come off too quick?
good luck

 

[Juben]

Thanks for the info... I'm going to read up on the links and probably call my GI doc to double-check!

 

[fenway1971]

Juben,
I'm shocked too at the doc's recommendation to suddenly taper. I was on pred for 9 months (Sept 08 - June 09). Tapered from 40 to 10 only to go back to 20 for a month or so. I tapered from 20 - 15 - 10 over two week period then from 10 - 0 over a 10 week period, 1mg per week taper. The headaches and withdrawal were too severe for me going from 20 - 10 that my doc suggested a very slow weaning off period.

Good luck! Talk to your GI again.

 

[Crohn's 35]

Hi Juben everyone is correct. I was told from my first Gi, the longer you are on them the slower the taper. I was on them for months and when I was told to taper, it was 2.5 a week, not 5mg. Now I am on 40mg for 2 weeks and then 5mg tapering every week. Being on it along time and then going off is hard on your body. I am surprised of your recommendation too. Good luck with your recovery. Will you be put on a maintenance drug?

 

[soupdragon69]

Juben

Can you go back to your doc and ensure you dont have any signs of post op infection please!

If you are having cold and hot spells you could be brewing something. It could also be coming down too fast off the pred as the others have already voiced concerns on too.

If you are on pred more than 2wks the reduction has to be in stages as your own adrenal glands can go into "shock" with have the pred stop so suddenly and then you wont have any natural cortisol produced.

PLEASE CHECK ON BOTH COUNTS MENTIONED ABOVE!!

Let us know how you get on.. will be thinking of you.

P.S In case you are wondering why I am so strong about the above I am an ex surgical intensive care nurse!

Hope you feel better soon. ((hugs))

 

[Juben]

I went back to the surgeon today and had my staples removed... they said everything looked good and even released me to go back to my desk job (18 hr wk) Monday if I want... less than 2 weeks post-op!. Also called my GI dr to get a 2nd opinion on stopping the pred, and was told to do it at 10 mg for one week, 5 mg for one week, and 5 mg every other day for one week then stop. I asked about it at the surgeon's office today (wasn't my surgeon that I met with but an associate) and he said that was fine. He said that after having been on steroids, the healing curve is slower so they just obviously want me off of it as soon as possible. I've been checking my temp when I have my cold spells and it is fine, even maybe a bit low. I guess it is from dropping down to 10 mg for the first time in a very long time. Not sure about maintenance drug, will find out in a few weeks. Thanks for your responses and concern!!

 

[Mountaingem]

I would definitely check with your doc-I'm not sure that was a safe taper, especially after surgury. I hope you feel better soon!

 

[GoDucks]

RE: Quick Prednisone Tapers.

My Crohn's is fairly minimal compared to many - maybe 4 flares per year, mostly controlled by self medication with prednisone. I usually go 60 three days, 40 two days, 20 two days, 10 two days, and off. That 60 the first day usually stops the flare in its tracks: yes, I know, unusual and mighty lucky for me. I have discussed this quick tapering with my GI Guy, who okays it, since it usually works for me. I assume that I am able to get off it quickly with no side effects because I am on it for such a short period. First few times I was on pred, I took the standard months to get off and drove everyone around me nuts, as well as myself. Unfortunately, for the first time in years, the initial dose was not the stopper this time and Doc is indicating that I may be on it for weeks waiting for relief. Not happy about that, but did want to make the point that a quick taper sometimes is the right thing.