I got sick right after I stopped prednisone

[drew_wymore]

I just finished a 5 week course of pred after being hospitalized with a small bowel obstruction. I felt great while I was on them ... minus the weight gain, bloating, acne and you get the idea :eek2: My GI screwed up and didn't wean me off them but I'm not sure that caused any problems or not. Anyways, within 2 days of being off the pred I started getting sick again, seriously bad night sweats, unable to hold anything down (solid or semi solid like pudding), major fatigue, diarrhea etc all the usual stuff. I am feeling better today and I'm putting a call into the GI doc but I'm wondering if this is normal? I am not on a maintenance drug yet but my GP told me during a checkup earlier in the week before I was off the pred that there was a note in my chart that they were going to put me on Imuran.

 

[Jvstin]

were you not tapered down?
last fall at a bad hospital they just flat out cut me off pred, I had a HORRIBLE time. actually caused lazy eye and major pain.
how much were you on?

 

[mikeyarmo]

Hi Drew,

It is common for people to have some trouble coming off of prednisone, especially if it is done rather fast. What dosage were you taking? A larger dose (like 50mg) is harder to stop all at once. Were you tapered off (as in you decreased your use by about 5mg every 2 weeks) or did you stop all at once? It is usually recommended that you taper off very slowly (by about 2.5-5 mg at a time over a couple of weeks). I hope you start feeling better soon, but please keep us updated.

 

[drew_wymore]

hey guys .. yea they didn't taper me off. It was 5 weeks on then stop with no tapering. I was on 40mg per day. I am doing better. Although I'm having some weird symptoms that I haven't had before like sore muscles and stuff but I don't know if its related. I'm making a call to the GI doc here in a couple hours when they open up to make a follow up appointment and figure out a plan going forward.

So I'm not crazy to think that not being tapered down may have caused me to get sick?

 

[katiesue1506]

AHH! They didn't taper you from 40mg?!?!? I took me about 4 months to taper from that dose... yes of course it could have made you sick!

 

[mikeyarmo]

My understanding is that corticosteroids (like Prednisone) trigger the adrenal gland in your body to turn off, as any prednisone intake above 5mg provides more corticosteroids than what your body naturally produces. It takes some time for your body to lose its dependency on the synthetic corticosteroid, and that is why you need to taper it down very slowly. Going from 40mg to 0 overnight seems to have been too aggressive, and I think it is very likely to believe that this had some impact in your current symptoms.

Wikipedia says that dependency occurs after taking the drug for 7 days, so definately speak to your GI about this.

 

[drew_wymore]

Mike,
Thank you soooo much! I read that article and went "wow thats pretty much how I was feeling" .. I talked to my GI's nurse this morning and she's got a page into him to find out what to do cause she agreed that 40mg to nothing was the wrong thing to do.

 

[Jvstin]

big tip for the muscle pain. keep up your potassium. eat bananas and/or drink boost like drinks. that will help with the muscles. and keep active.
I can't believe they didn't do a taper down, at least to 10mg.
that's just insane.

 

[Kev]

There are 2 schools of thought on the use of pred for treating IBD. One is to give it for a period of time, then slowly taper off... to minimize the nasty effects of pred withdrawal. And pred withdrawal, even done via a slow taper, can be very nasty. The other school of thought is to shock the system... sort of like a big ol kickstart. Pred is given in a high dose for a period of a month or more, then suddenly its all withdrawn.. cold turkey... no slow taper. That can be even nastier for the patient... and today this 'old school' method is considered just too intense for many docs to try. Oddly enuff, there apparently are no clinical studies on pred withdrawal one way or the other... Just generally accepted schools or theories on both methods. Many docs swear by the latter method, despite how hard it is on the patient, as the 'shock' they claim is more effective in getting a patient into a remission. I did go thru this latter method, done by my GP at the time (pre diagnosis), and it put me into a remission that lasted 10 years. I have since done the pred withdrawal 2 - 3 times in the last 2 yrs w/o getting a remission. Does that prove anything? I don't think it does, just that my earliest 'outbreak' oh so many years ago was milder than this current one.

 

[drew_wymore]

@Jvstin thanks for the tip on the muscles.

@Kev .. according to the wikipedia article Mike linked, the shock method could potentially caused more problems with the Addisons stuff but who knows. I'm not a doctor heh. I do know that the shock was not good .. I felt worse coming off it then I did before I went on it.

I'm back on a 5 week course that tapers from 20mg down through 5mg to 0mg .. I'm hoping it'll be much easier this time around.

 

[katiesue1506]

Yeah I remember going from 30 to 60 to 40... and then 40 to
--30
--25
--20
--15
--10
--7.5
--5
--2.5
--2
--1

It was a verry LOOONG process.

 

[Kev]

I'm not recommending it. I went thru it... 45 treatments, massive dosages. It was an absolutely horrible process, far more painfull than any of my symptoms. I hated each and every dose.... as it literally tore me up inside in really horrendous spasms. My doc at the time did it in sheer desperation, as he couldn't diagnose what was going on with me (that sound familiar to anyone).. But it did work. The thought of ever having to repeat that process terrifies me.

 

[Creepy Lurker]

Yeah I remember going from 30 to 60 to 40... and then 40 to
--30
--25
--20
--15
--10
--7.5
--5
--2.5
--2
--1

It was a verry LOOONG process.

I had a tenancy to flare up when ramping down the dosage like this, so it was done in 1mg steps. Took almost a full year to finally get off them all together.

 

[amor151]

creepy lurker - when you finally got off the preds where you in a state of remission??