Sadly, this is something you will just have to muddle through on. What signals the adrenal glands to produce their own cortisone is a drop in the levels. Once you drop below about 5mg of prednisone, you'll need some from your adrenals. It can take time for them to respond. I would like to tell you to take this or eat that and you'll feel better, but it would just be a placebo effect. There are no vitamins or supplements that replace this. If the symptoms are completely intolerable, you can bump up the prednisone and slow the taper, but that will just prolong things. The good news is that it is fairly rare that the adrenals are permanently suppressed. But, it does happen. 

 

I felt like crap for months after stopping prednisone. Joint pain, fatigue, weakness, etc., but I muddled through. If you feel dizzy or faint or rapid heart beat call your doctor, as you may need to backtrack on the taper.

 

Jan

Wish I could help, but am joining conversation to to commiserate with you. I am 18 months post take down, went on Prednisone after trying multiple other drugs to relieve Cuffitis which caused bleeding and increased frequency about 5 months after takedown, and have been tapering down from 40 mg. slowly since January. Middle to end of August dropped from 7.5 mg. to 5, and after few days felt okay. But for past 3 weeks I have been exhausted with no other symptoms except occasional dizziness. Had bloodwork to check hemoglobin which was problem for me in April. Also had thyrod checked. All tests showing normal but I'm still just exhausted, and feel need to nap constantly. Trying to work but if I do, I come home at 4 and collapse. I didn't relate it to coming off prednisone, because it didn't happen right when I tapered to 5, but maybe it was still in my bloodstream. Now, I'm alternating 5 mg every other day for 3 weeks and then will alternate 2.5. Maybe this is the result of my natural prednisone not kicking in yet? Maybe my adrenals will kick in soon! Hope so cause I am also wretched tired  and my joints are achy. I've been wondering what else to do but maybe as Jan points out it is part of process and nothing else is wrong with me. Wishing you well! Thanks for posting and Jan thanks for your input as I was feeling frustrated with my lethargy and didn't really think about the prednisone taper causing it.

Laurie

My poor husband and that awful steroids..that was the main reason he decided on the j-pouch surgery.  He felt so much worse on it than the awful colitis. It took him awhile to feel better off that 'stuff'.  Eventually, all will work out. Hang in there.

I wish I felt worse on prednisone than off it! I am one of those who get the euphoria effect. I just recently did a fast taper of prednisone with a total dosing period of only two weeks for a severe arthritis flare. It was the first time in years I was completely pain free from my arthritis. Almost a cruel joke being on it, knowing my baseline pain would return after the taper. Oh well, it was great while it lasted!

 

For those of you who have been on it for months, please be careful, as adrenal insufficiency can be dangerous and lead to vascular collapse. Please report it to your doctor if your dizzy spells are more than mild or fleeting. You may need your cortisol levels checked.

 

Jan

I *love* steroids. I, too, feel amazing on them. 

 

That being said, I know it's a mixed bag, like the angel on one shoulder, the devil on the other. 

 

Im on a super slow taper. Steroids are the only thing really that put my fistula quiet. Otherwise, the outlet area swells and is painful. 

 

I started at 20mg for two weeks, then 15mg for two weeks. At 10mg, things start to feel worse, so we are going down by 1mg at a time, every 2 weeks, to find my absolute lowest comfort zone. I'm on 7mg now. At this level, I have no euphoria. That stops for me around 10 mg. 

Hi everyone. Thankyou for your thots on Prednisolone withdrawal. It seems to me that it is going to be a slow process. After further searching the Internet I came across a post from another site. This person suggested strong doses of vitamin b to help in the withdrawal period. I went and spoke to the local pharmacist who suggested trying Natures Own Brand. Super B Forte. He said that along with the general multivitamin that  I have been taking to take the Super B Forte which will serve to give me extra energy whilst I am going through this withdrawal period. He also said that depending on the individual and the amount of Prednisolone they have been taking and the time they took it for will depend upon the time it will take for the Adrenal gland to start working normally.  Today I started on Super B Forte Natures Own and to be quite honest I don't feel as wretched as I have been feeling. I'm not saying this is the answer but it might help to improve the situation slightly. The other alternative is to go back on a low dose of Prednisolone and try again to gradually taper off. This is what I have been repeatedly doing in the past. So I might try and persist with this medication regime and hopefully things might start to improve. Thankyou for your comments. This site has been a life saver for me in reading about other people's similar experiences which confirms that I am not alone in this journey. My daughter who is a nurse told me that she tells her Stoma patients that in difficult situations to not look at the immediate present but look ahead to the future where things will improve and life will hopefully take on a better meaning.  I hold on to this challenging concept. Cheers

Be sure you are staying well hydrated.  One of the symptoms of dehydration for me was complete lethargy.  This seemed to happen frequently when I had the ileostomy.  I'd take myself to the ER and ask for an IV.  Just drinking water didn't do it back then.  Best wishes!

Hi Ceee Ceee thanks for your reply. That's a good thought about dehydration. Some hydra lite wouldn't go astray. Thanks for your email. Cheers