I know there have been several posts on this topic before. I have read through them all and am still unsure if I should call my doctor or not.

I had step one of the J-pouch surgery at the beginning of April. Prior to that I had been on 30 mg for about 3 months and on/off the whole year before that. I usually always had a hard time tapering and when I got out of the hospital, was put on a 5mg taper each week. Each week I was nauseous and would throw up for a few days but then it would go away. Now I am completely off and things have been annoying for a week now. I get very dizzy every time I stand up, am throwing up daily, getting very bad headaches, and overall feel very blaaah. I keep telling myself this is temporary but it upsets me because some people are saying this could last for weeks or months.

Should I just keep dealing with the symptoms? How do I know if I need to go back on it (which I really do not want to do) and taper slower, like by 1 mg? Or is it too early to call?

If you were on 30mg of prednisone per day for 3 months right up to the time of your surgery you need to be careful tapering off. This is particularly true once you get down to doses of 10mg or less. Your body usually produces the equivalent of about 5 to 7.5mg prednisone per day, but will not be able to do so for a while after you stop.

There are all kinds of different taper schedules out there, and each person is different, however I would go slow on the taper below 10mg. I was on 50mg per day going into my surgery and had been on prednisone for the previous 10 months. I left the hospital on 30mg per day then went down 5mg per week until I reached 10mg per day. I then went down 2.5mg every two weeks until I reached 2.5mg per day, then alternated 2.5mg per day with 0mg per day for two more weeks. Even this may be too fast for some people.

From what you're describing, I think you may have gone too fast, and may need to be back on a low dose for a while longer. You should definitely check with your doctor. Hope this helps and hope you feel better!

I was on a very high dosage of prednisone, 60mg, but only for a month. However, they tapered me off of that in one week!! I had horrible withdraws: nausea all the time, I couldn't eat, headaches, and constant crying. It lasted a couple of weeks. But I would call your doctor, because the throwing up is not a good thing. Good luck!!

Thank you both for responding! I was feeling really good yesterday all day and night so I was excited. But today I am feeling bad again so I think I should call because I agree Dr. J....I think it was too quick of a taper. Wow Jillian I cannot believe they tapered you in one week, that is crazy! Did you have to go back on or did your withdrawal symptoms just go away?

I can relate to your symptoms. I had step one done Feb 28th-one of the worst things about my recovery was the prednisone withdrawel. I was discharged on 30 mg and my GI Dr also wanted me to decrease by 5 mg per week. I had been on and off steroids for the last year. I just couldn't tolerate 5 mg per week and did it slower. When I got to 5 mg I took it for 2 weeks then 2.5 mg for 2 weeks and then 2.5 mg every other day for about a week. I am sorry you have been feeling badly-how are you doing now? Did you end up calling your Dr? My thoughts are with you!

My daughter had severe prednisone toxicity. She was unable to communicate. She had been on between 20mg and 40mg for several weeks. Because of her symptoms they got her off quickly 2.5mg every other day until she was completely off. It took two weeks. During the tapering time and for several months she was put on depakote, which is an anti seizure medication and as it was explained to me kind of coated her brain to protect it from the prednisone. This is almost 2 years ago, and she never had any of those withdrawal symptoms and is doing fabulous.

I ended up calling my surgeon and he was out of town all week but one of his partners told me that these symptoms I was describing did not sound like withdrawal and to make an appointment to see my GI doctor. I think he is completely wrong because I know for a fact that those are the symptoms of withdrawal. Then he said if you want take 5 mg every other day for a few weeks and if you feel better, then it was withdrawal. Sounds to me like he has no idea what he's talking about. Yesterday I felt really good and this morning I've been fine. So I am hoping I got through it but we'll see I guess. Mila, the prednisone toxicity sounds severe. I am glad she is okay now!

Jules...I'm not so sure that you do have prednisone withdrawals. I had my first of 3 surgeries on Feb 7, 2007. Prior to that I was on 80mg of prednisone per day for the previous 6 months. I have been on prednisone many many times in the 8 years I had UC before surgery and it is NEVER easy for me to taper.

I think your surgeon may be right. After my first surgery I also experienced dizziness, headaches, vomiting, and nauseous ALL THE TIME for a few weeks after surgery. One of the biggest problems with having parts or all of your colon removed is dehydration. Dehydration will cause dizziness and headaches. I was hospitalized for a week just because of dehydration only 2 weeks after surgery. The nausea and vomiting can be attributed to a few different things. Obviously any type of surgery on your digetive system can cause this. After my surgery I was vomiting and was incredibly nauseous for 10 days. I could barely eat, I felt kinda icky and didn't want to get out of bed. It kinda felt like I had the flu. I found out that I had an abdominal abcess. Whenever you have abdominal surgery, fluid builds up in the abdomen and over time your body absorbs it. However, prednisone hinders the body's ability to heal quickly so it can take longer for people on prednisone to absorb this fluid. In my case, my body started to form scar tissue before all of the fluid was absorbed and I ended up having little pockets of fluid in my abdomen that had been sealed off by scar tissue. It caused an infection and as a result I vomitted and was extremely nauseous. So, I would go back to your surgeon even though you might think he is wrong. Just be careful. Fevers are a sign of infection, so if you get a fever go to your doctor immediately!

My biggest problem coming off of prednisone was not being able to sleep.I was extremely tired but I could not shut my eyes for the life of me.It drove be absolutey nuts!This lasted for about 3 months as I recall.I swore that no matter for what reason I would never ever take prednisone again!!!

Thanks for the advice Kery. Things have been good for a few days straight now, I've only been taking Tylenol for some headaches, but no vomiting or nausea. I did not realize that I needed to be taking immodium on a daily basis from now on. My nurse said my bag output should be thick and I told her it was all still liquid. She said if it's all liquid and I empty more than 7 times a day (which I do) then I am probably a little dehydrated and to take immodium to make the stool thick. I did not realize it because I drink sooo much every day! So maybe that is why I still am getting the headaches.

quote:

I did not realize it because I drink sooo much every day!

It's funny that you say that because when I had my ileostomy, I felt like I was drinking ALL THE TIME but I still had sooooo many problems with dehydration. My surgeon told me that a normal person should drink about 64oz of water per day and that I should double that and include at least 16oz of any kind of beverage that had electrolytes in it (preferably Gatorade). I'm not sure when your takedown is but I am willing to bet you that all of these symptoms will completely disappear shortly after your takedown =) Good Luck!!

OMG, I was so sick for weeks after coming off that horrible stuff. I thought I would never feel better. I had horrible joint pain that lasted for over a year in my legs and fingers-so strange.
Hang in there-I know it's hard.
Susan