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Steroid-refractory & steroid-dependence

How many of you have these condition at the same time?

Steroids are not enough for me, but when I try to left them (even very slowly), things start to get worse. I'm on remicade every 4 weeks.

my little penguin

Staff member
Have you seen a endocrinologist?
They can help wean much slower than Gi
And they can test for adrenal insufficiency which can cause symptoms when your trying to wean off steriods after being on them for a long time
My kiddo had adrenaline insufficiency for over a year .
Had to wean at 1 mg reduction every two to three weeks
Took forever but he eventually got off steriods
Is remicade working for you ?
His humira stopped working hence the long steriod use
He had to switch to Stelara
Hello, No, I haven't seen an endocrinologist. My GI never mentioned that idea so I didn't think about it. But I'll bear that in mind next time.

Remicade seems to work, my blood test improved a lot when I started remicade, but a few months later when I left steroid symptoms appeared again, so I changed to remicade every 4 weeks, and again fastly blood test become "normal", but when I left steroid symptoms appeared. It's a eternal dependence, i don't know to manage it.

It seems my body every time needs more and more....

Thank you for your comment, a piece of hope.

my little penguin

Staff member
The most common signs and symptoms include muscle weakness and fatigue; muscle, joint or abdominal pains; and decreased appetite and weight loss.

In addition, signs and symptoms can include lightheadedness, feeling wiped out by an ordinary illness, depression, nausea, vomiting or diarrhea. Cravings for salt and darkening of skin, especially on the face and hands, or on moles, scars or skin folds, are seen only with primary adrenal insufficiency.

Symptoms of adrenal insufficiency can develop suddenly and rapidly into an adrenal crisis. This can occur in someone who has been diagnosed with adrenal insufficiency or in someone who has yet to be diagnosed. Often, an adrenal crisis is triggered by health-related stress, such as an illness, surgical procedure or serious injury. These are also the times that higher cortisol production usually would occur in someone without adrenal insufficiency.

As symptoms of adrenal crisis escalate, most people feel terrible — perhaps with severe abdominal pain, nausea, vomiting and lightheadedness — and realize that emergency care is required. Some people may pass out, requiring help from others. An adrenal crisis can result in death if not promptly treated.

Adrenal insufficiency can be confirmed or ruled out with blood tests. Although there’s no cure, primary adrenal insufficiency can be managed effectively by taking cortisol and aldosterone replacement hormones, with the goal of stabilizing hormone levels and relieving signs and symptoms.

my little penguin

Staff member
Please see an endocrinologist
Neither of Ds’s specialists (Gi or rheumatologist) ever thought to recommend an endocrinologist
It was the allergist who suggested it based on reoccurring symptoms we thought were “ just crohns “ or just arthritis 😞