Feeling of needing to urinate from steroid taper or surgery

This sounds like a UTI. He should go see his regular doctor.

Sue

No he is not urniating a lot. He does not have any fever, chills, or pain. It just feels quite uncomfortable after going to the toilet. It goes away after a while.

I had similar symptoms a month or so after surgery. It sounds like a UTI. That is what mine was and UTIs can happen after this surgery. I was not on prednisone. I did not want to take antibiotics so I took d-mannose and after two days mine was gone. Google it, it is a safe supplement for UTIs and often used when the patient has chronic it is and isn't responding to antibiotics anymore.

Your husband may have fatigue and achy joints for a full year after his last dose of prednisone. I did and so have many others. It's unfortunately the drug that keeps on giving.

Sue

My husband had been on prednisone for over 3 years. Once he got below 5 milligrams, he started to feel sick and when he went below 2.5 mg, he was feeling really lousy. Trouble breathing, spaced out, feeling lousy etc. One night he thought he was having a stroke. But it was really all prednisone withdrawal symptoms. The issue is that the adrenal gland has gone to sleep, and it takes awhile to wake up.

The GI did not have much experience with long-term prednisone use, so we went to endocrinologist.

Her view was that the taper was too fast (we thought it was super slow -- one milligram every week or so), and that with a proper taper, one should not have withdrawal symptoms. So she put him on hydrocortisone, which is a shorter active steroid, than prednisone, which stays in your system longer. He was taking hydrocortisone in the morning and in the evening, which also mimics how your system regularly generates cortisone. It will take many months to get off it.

On the hydrocortisone regime he felt better but has developed neuropathy in his feet. So now we are seeing a neurologist and have stopped tapering until we get comfortable that we understand the neuropathy.

Suzy-q, thank you for telling me about your husband.

My husband is quite impatient and thought he would be off the steroids by now. Over the last 3 and 1/2 months he has down from 20mg to 5mg. The withdrawals started getting bad when he went under 10mg. From then he has gone down by 1mg and stabilises each time before a drop. He is going at a rate of 1mg every month or so. He has been on 5mg for the last 2 weeks and still feels rubbish. We are seeing his doctor Friday so hopefully he can help.

I am sorry to hear your husband developed neuropathy. How is he going with it now? If you don't mind me asking, was that a direct result from the hydrocortisone or prednisolone?

Your husband's long-term use of prednisone may have had an adverse affect on his HPA axis (hypothalamus-pituitary-adrenal gland axis).

His excessive urination may be due to the pituitary releasing too much of the hormone vasopressin causing diabetes inspitidus (this is NOT the same thing as diabetes mellitus).

Diabetes insipidus is seen as excessive urination. Certainly, that your husband has been on prednisone as long as he has gives credibility that there may be a pituitary component to his excessive urination.

Prednisone is not a benign medication. The side-effects can be insidious and serious.

I have been on long-term, high dose glucocorticosteroids with devastating effects - many of the effects have come in the last few years and during a time when my use of steroids was on the lower end in terms of dosing.

Your husband would do well to consult with an endocrinologist with known understanding of the HPA axis. Do not go to an endocrinologist who practice is based on diabetes and metabolic disorders. Not all endocrinologists are knowledgeable of the pituitary. Take time to find an endo with speciality in the HPA axis. Do your due diligence.

Best wishes to your husband for better health in the days ahead,
- Karen -