Tapering off prednisolone after 4 years

My husband also experienced withdrawal symptoms after being on prednisone for 3 years. In addition to extreme exhaustion, he was suffering from difficulty breathing and fuzzy headedness. He also developed neuropathy (numbness and tingling) in feet. The whole thing made him very anxious.

He ended up seeing an endocrinologist. She said that if you properly taper (I don't think GIs know what that entails for long-term users) you should not experience any types of symptoms. He is still tapering .5 mg every month.

At this point, an endocrinologist might put your husband on hydrocortisone, which is a steroid but is in your system for a shorter time than the prednisone so that he can more easily manage the dosing and let his body's adrenal glands kick into action without him feeling the terrible withdrawal symptoms. I know that some people suffer it out, but after so long it may be worth seeking out a consult with endocrinologist.

Did they check his adrenal gland functioning with the bloodwork? A GI might not have.

Good luck. My impression is these things work out but it takes time.

He had gotten down to 0 on what he thought was a very slow taper (1 mg every few weeks, and then .5 mg per the end). He was doing alternating doses, which your husband might want to try. 2 mg/1 mg / 2 mg / 1 mg. And then down to 1 mg / 0 mg.

The symptom that really freaked him out was shortness of breath and he thought he as having a stroke. Once he got up and about it would be o.k., but it was upsetting (as so much is with this disease). So the endocrinologist put him on cortisol (not hydrocortisone -- that' s an ointment) with a certain dosage in the morning, and another dosage at night. That mimics that activity of adrenal gland function. He was so upset by the neuropathy, however, that he didn't give it much of a chance. Doc said it would be o.k. to go back up on the prednisone to the point where he was experiencing no symptoms, which had been 8. We are now down to 6 mg. He is exhausted in the mornings but that is all. Still has the neuropathy.

Endocrinologist had treated people who were long-time steroid users and then had their colon removed and then had to deal with steroid withdrawal.

His adrenal gland probably is functioning, but not enough.

He is at a low enough level that doctor will be able to check adrenal function with bloodwork. That will give you and him peace of mind.