Good morning. A quick note about how I ended up where I am now. Originally put on multiple “bursts” for different reasons, including bronchitis, asthma flare, meta pneumo virus, and finally acute sinusitis that turned into chronic sinusitis.
I was always able to get off of prednisone by tapering however each time it became increasingly difficult to get off of it. This last time I have been put back on it because they thought I was having adrenal insufficiency from having been on so many courses of it. Then I had a cortisol level and a ACTH level drawn which apparently were at acceptable levels so I was told to stop it completely. The symptoms I had when decreased from 5 mg to 2.5 mg daily and then taken off completely were horrible, dizziness, nausea, stomach pain, constant cold clammy sweats with pale skin, extreme fatigue and headaches.
The symptoms I have while on the prednisone are horrible too, I can’t sleep, my heart races, horrible reflux, shaky, and worst of all my emotions are all over the place, I cry for no reason, I’m anxious and irritable, and now my hair is falling out the last 3 weeks. I have never wanted off of a medication so badly in my life. The message from my endocrinologist in response to me telling her I want off of it as quickly as possible but safely, don’t even make sense to me as she said, “you can stop it for a few days and see how you feel” or “I will prescribe 1 mg tablets and you can wean off more slowly.”
She didn’t follow through and send the prescription for the 1mg tabs that I told her yes I wanted to try, so I have been taking the 2.5 mgs for the past several days. As of this morning I couldn’t take the side effects of cutting back from 5 mg to 2.5 so I took 5 mg this morning and will hopefully get the prescription for the 1 mg tablets so I can start the slower tapper by Tuesday. I know this is a long winded message but I wanted to add some content to the journey I’ve been on in hopes of helping someone else maybe AVOID the drug if at all possible. It is definitely hell being on steroids and hell getting off of them. May I ask what dose your son is on, how long he’s been on it, has he tried to come off of it, and what his side effects are while taking it and/or trying to come off of it?