Stopping Prednisone Cold Turkey

If you are on more than 20mgs a day and anything truamatic happens, surgery, a car accident, a major emotional shock and tehy don't give you extra pred it could be fatal. That is one reason my rhuemy has her patients on long term pred therapy carry id such as medic alert stating the dose and condition.
They still should have told you though-that would drive me crazy.
Sj

It's good to hear that it's going alright.

Still, I wouldn't recommend what you're doing. I could understand why you first thought about it, but after hearing all the responses, it's hard to believe you would take the risk.

I was diagnosed with Crohn's in June 2005, a week after I turned 20. From March - August I had went from 155 pounds, down to 108. Prednisone was the second med I tried (after Pentasa didn't work). They started me on 40 mg in August. Every time they tried to wean me off I would start having problems. I was only supposed to be on the for about 5 months. My schedule towards the end was 10 mg for 2 weeks, then 7.5 for 2 weeks, then alternate between 7.5 and 5 every other day for 2 weeks, then 5 for 2 weeks, then alternate between 5 and 2.5 for 2 weeks, then down to 2.5 for the final 2 weeks.

When I was on 5 mg I noticed some muscle weakness and slight joint pain in my legs(around December 20th). I ignored it for a few days. By the 24th I was alternating between 5 and 2.5 and started having trouble standing for more than 10 minutes. The night of the 25th my ankles had become so swollen that I couldn't even stand up without pain. I had to call my dad from my driveway to ask for help walking about 20 feet from my car to the house door.

I was freaked out and went to the hospital the next day. My uncle carried me to the car. Afetr receiving steroids, painkillers, and anti-inflammatory meds through an IV the pain barely decreased. My GI increased the pred to 30mg after that. I used a wheelchair to move around the house for the next 4-5 days because I could stand w/o holding on to something. I would get an average of about 2 hours of sleep/night because I was in such pain.

Prednisone worked great while I was on it. I gained back all the weight. I'm currently 165 pounds and have been off prednisone for about 10 months (I was on it for about 22 months). It's a horrible drug though, and I personally wouldn't mess with it.

I am NOT stopping cold turkey. I am tapering & I think I am doing okay.

GI finally called, not about my pain & questions with the lump & all but they are moving up my coloonsocpy from the end of the month to Thursday. So tomorrow I have to start the prep. I am not excited to have to do it again. I was kinda hoping I could cancel, but they don't want to give me any information about this lump & pain & all without her seeing for herself & checking out the cecum & ileum. I have been tapering because I feel pretty good (besides the pain) & have reduced my BMs per day to 2-4. No D. So I wonder if the colonoscopy will see anything or not....?

I've found with having this disease you need to have compliance and two-way communication with your doctor. If your doctor is not kept in the loop with your decisions you'll soon anger him/her. The drugs that are prescribed for this disease are potent and as many people have indicated previously in this post can seriously harm you if you stop them suddenly. I believe you might have been on too low a dose, and that's why you've not noticed a good response. I believe you should have a real heart-to-heart with the GI when you see her and determine if your expectations of care meet her treatment capabilities. It's not right that she didn't phone back to discuss medication options and potential taper, but it's a two-way street and it's not right that you began the taper without her knowledge or instructions.
Yes the drug has unpleasant side-effects, but if they're not life-threatening or unbearable, I think you should have waited to have medical instruction.

Sure, done it many times, and for me the problems really set in at the 10mg every other day, or 5mg a day dose or lower, tapering any dose above that is not so much a risk, but is still dangerous.

Start out with a wonderful, glorious feeling, almost a type of amazing freedom that last 1-2 days.

Then a horrible type of fatigue that is just beyond abnormal, that happens within 2-4 days for me.

Appetite disappears, mouth begins to stop salivating, almost feels like intestines turn off.

Now the BAD...

Dizziness, light headness, blood pressure fluctuating, passing out, heart beat cycles from rapid to slow, very difficult to keep body fluids regulated, easy to become dehydrated, and I have out of control/non-stop panic attacks. Basically very low cortisol in the bloodstream.

Taking Pred at this point will often correct the issue FOR ME, and after about one week of misery things are getting back to normal.

Depending on how dependent you are on pred/cortisol, how long you have taken it, how much, how far along your adrenal glands are suppressed, you can easily slip into a coma and/or die at this point.

Or your adrenal glands will produce enough cortisol on their own to keep your body running.

Hope this Helps, and this is how I react to pred. withdrawl which of course I am not at all advising anyone to try ever, and was more of a learning experience when I was younger. These days I taper pred using the 1mg tablets at about 1mg per month, which doesn't put me in danger, but does flare up my CD.

I so want on remicade.

Take Care

Mabye prednisone did it's job... Scope was normal. Nothing she saw. She said she was very aggressive with the biopsies, she took many & very deep ones & she wants to see what they say. I will have a lot of blood. I can't believe it looked fine. Weird. Last scope had the colitis & ulcers. No ulcers this time. But, I haven't had any blood lately so the no ulcers doesn't surprise me. It's still hard for me to maintain my weight though.

She said she wants to do the promethsius labs test if the biopsies don't help with the dx. She also said something about an infection that can linger & cause problems, but I don't remember anything about that conversation (this was after colonoscopy & I was having such a hard time remembering things... )

No info on the pain & hip pain. I am thinking now hip pain maybe not related?

Concerning the lump in my right lower abd., she didn't know. I still really believe it is stool getting caught since when I did the prep & at first after 5 hours of starting prep no D had started, I had my lump again. Then as soon as the D began, it was gone. But of course, I was all cleaned out & no lump present, she felt & felt my belly (pushing so hard! It was tender, she was pushing too hard....) & said something about a vein and that I am very, very thin. I am confused.

I cried a lot when I got home. I don't know if that was the sedative or just that I STILL don't know which I have, UC or CD & she said this scope was going to tell her. It's so frustrating.

I am still waiting for the biopsy results. I think the GI thinks the biopsies will show something. I hope so, I am still waiting for a dx....

She is calling in my script for prednisone. 10 mg, 2 times a day. 3 refills. So no taper schedule yet. I am bummed about that. I don't really understand if my colonoscopy was normal, why I still have to be on this crap.

I should hear about the biopsies by Friday.

please hang in there, though--I know how hard it is to take meds that make you feel sick

pix

I just wanted to update, going down to 10mg tomorrow—per the doctor's taper instructions! : D

I am going down 5mg each week. I have been on 15mg, going down to 10mg tomorrow! I can't wait to get off this stuff.

I talked to the doctor this morning. She said I was going to have sore joints coming off of it. Anything I should watch for?

What? What do you mean? How do all these threads end?

Well, I went down to 5mg Wednesday. Felt fine, a little tired. Then Friday I was at work feeling really shaky & weird. I kept feeling like I was going to get sick, and then all of the sudden, I did. I vomited & had like 5 BMs. I ended up going home & slept from 4pm till now. I am still so exhausted. I have lost 5 lbs yesterday. I am afraid to eat, afraid I am going to get sick again. Is the worst over? I am not sure if this is from the prednisone or I just have the flu....

I am with you. I hate it. I am down to 5mg. I will be totally off it Tuesday! I can't wait! But I have been pretty sick. Sooooo exhausted.

I am 5' 8" & 123 lbs. I did gain a little after about a month on the predinsone (20mg a day), but I just lost again. I was down to 116 lbs though, so I am glad to be over 120. I am tired of people telling me either how skinny I am or how good I look after losing the weight. (50 lbs.) I was usually 170. It's nice to be thin again, but I would trade it all back to feel better.....

Hi all. I'm new here and find everything very interesting about prednisone. I myself have been on it for over 2 weeks now and it's not the first time. I hate it. They do nothing but harm your body. I realize sometime they are needed when someone like myself gets into trouble, ( I have COPD)but my Dr. knows that I have very bad reactions to it and he will try to limit my time of usage! The first week I was on steroid IV in the hospital. Then he sent me home with 40mg for 10 days, then down to 20 for 10 days and then 10 for 10 days etc. etc etc. Well I didn't even get to the end of the 40, I was on my eight day and couldn't take it. So I called him and he said to drop back to 8 days and start 20 now and keep weaning down. I seriously believe that in some people such as myself, they do more harm that good. I feel everyone's pain that must take them. I make them absolutely the last resort to take. I hate the nervousness, the weight gain, the indigestion, the hot flashes, can't sleep, muscle aches, weakness. Now tell how all that is suppose to make anyone feel better.