Did any one succeed in coming off of steroids after being on them for many years?

I have been on pred for a year and 2 months and then was switched to budesonide (entocort) since November 2011. Since then, I have been on different doses from 3 mg until 9 mg. In 2016, I started Remicade but due to the fact that neither my proctitis nor my fistula responded to Remicade - though my intestines did, my GI switched me to cortiment (budesonide) another form of budesonide that is absorbed in the colon. I tried very slowly to taper budesonide. Budesonide is not available in my country and a friend brings it to me. But because of some circumstances, she couldn't manage to get me any new meds. I don't have enough and so my GI decided I have to go down more in the tapering. I'm now on 6 mg but I'm suffering. Is coming off of steroids a possibility after being on them for 8 years or should I give up after all these years and try to get more budesonide? I was hoping I would but this doesn't seem to be the truth even my GI didn't seem to like the idea of not having meds.

Go very very slowly, like reduce just 1mg a month. If symptoms flare go back to the last dose and stay there until stable before reducing again. Try alternating days. Reduced dose 5mg one day, then full dose 6mg the next, for a week or two before going to 5mg every day for a while.

There was somebody on here who'd been on steroids for 20 years and managed to get off them. Unfortunately I don't remember who it was, but if you do a site search for steroid (or prednisone) taper in the top right box, lots of old threads on the subject should come up.

As someone (myself) with adrenal gland failure I strongly recommend that anyone who has been on prednisone or other glucocorticosteoid for Chron’s management be aware of secondary adrenal insufficiency.

Use of prednisone in excess of 7.5 mg per day for a month or more has the possible risk of Pituitary suppression. The Pituitary gland secrets the hormone ACTH that communicates with the adrenal glands via a negative feedback loop to regulate the secretion of cortisol. Cortisol is a life-essential hormone that is needed by every cell of the body at an intracellular level. Low/no cortisol has broad systemic effects. You will feel immensely unwell.

A tapering of prednisone is done in order to “reboot” or stimulate the HPA axis (hypothalamus-Pituitary-adrenal axis) where it has otherwise been suppressed by taking exogenous steroids. The higher the dose of corticosteroid prescribed and the longer the duration the greater the likelihood of Pituitary suppression and secondary adrenal insufficiency. Not every HPA axis will successfully reboot and regain function as the corticosteroid dose is dropped with each titration. Some pituitary glands will remain in hibernation.

The problem is that secondary adrenal insufficiency is not on the radar of most physicians. Rheumatologists (who are frequent prescribers of glucocorticosteoids) and even endocrinologists can be stumped by its presentation. People can be left languishing, their health deteriorating.

The symptoms of secondary adrenal insufficiency are broad and mimic symptoms of any number of other possible diagnoses. This is because cortisol affects every cell in the body so the symptom profile of adrenal insufficiency covers a wide swath. Symptoms also wax and wane, which can be confusing when attempting to make a diagnosis. Symptoms wax and wane as the body trys to compensate, like a car that sputters when the fuel tank approaches empty.

Symptoms to be aware of: Unrelenting fatigue, fatigue not relieved by rest or profound fatigue with simpe standing; intense, diffuse muscle and joint pain; localized side/low back pain in the area of the flank/kidney area; brain fog and difficulties with concentration or complex reasoning, hypersensitive to lights and sounds and touch; gastrointestinal upset, nausea, and/or vomiting, low appetite; dizziness, low blood pressure.

Often is the case that adrenal insufficiency is mid-diagnosed (often as fibromyalgia or
Chronic fatigue syndrome). Physicians simply do not have awareness. As a patient with history of corticosteroids, YOU may have to bring secondary adrenal insufficiency to your physician and request baseline testing.

The National Adrenal Disease Foundation (NADF) is a resourceful resource. So, too, the Pituitary Network Association (PNA). Both are found on the internet.

If you are tapering off of steroids and having difficulty with tolerating each dose reduction (I.e you feel crappy) it may well be that you have a degree of Pituitary suppression and secondary AI. Be aware of secondary AI. Be informed. You may have to advocate on your own behalf for diagnostic testing.
Karen

I was on prednisone for years and could not get off. I would keep flaring at the 5mg mark. I mentioned this issue to a co worker with chrons and he recommended I go see his doctor. After I explained my issue, his doctor said to me "have you tried tapering down by 1mg - like 5-4-3-2-1?". My other doctor had NO clue there were 1mg pills! Right then and there I knew it would work. I changed doctors and was finally able to get off prednisone after 5 years! Once I got down to 1mg, I took 1mg for a week, then 1mg every other day. And then completely off the next week. Unfortunately the prednisone completely screwed up my bones by then