Posted 10/10/2014 8:53 PM (GMT -5)
I came out of the hospital the beginning of last month on high dose steroids. After talking to my doctor he's allowed me to control my tapering and given me as many tablets as I need. He wouldn't do this just for any patient -- I'm an analyst, but also I know my body and I've had lots of experience on steroids with it (my body) since I was diagnosed with this disease (UC) in 2008.
I left the hospital taking 60 mg. The leaving orders were to drop by 10 mg every 2 weeks twice then by 10 mg every week after. For me that's incredibly fast! That's a huge problem. Anyways - that's resolved after my doctor (not the one who prescribed the hospital leaving meds) knew I knew what I was doing.
I don't believe any of you should just go out and do this kind of thing on your own. I communicate with my doctor and he's confident in my abilities - you should talk to your doctor if you wish to adjust your tapering.
So here's how it's gone so far. I did taper down to 50 mg after 2 weeks, and that is when it started to get harder. After another 2 weeks I tapered down to 40 mg and sure enough that day did not go well, especially towards the end. I decided to bump up to 45 mg and that day went very well - so this is getting easy to figure out you say? It gets harder as we get lower and I know this. After only 2 days of 45 mg I was confident enough to try the 40 mg again, that went well too and I stayed on that 40 mg for another 2 weeks and tried to drop down to 35 mg. That day (yesterday actually) wasn't too terrible, but new symptoms (or so I thought) started. Fatigue and unable to keep well awake at work. Bathroom visits increased in the evening. Got some slight dull pain on my left side below my ribs. Then it hit me -- I had this fatigue, but only for a few hours, on the last day I dropped my dose. All of these symptoms are basic prednisone withdrawal - and I took the pain as a sign my adrenal glands were starting to work more than they had in a while. So! Back up to 40 mg for a day (a day later) and the day is back to being really good and energetic! Earlier in the day after experiencing this I called my doctor and asked him to prescribe some 5 mg tablets so it would be easier for me to quarter them. I'm going to start dropping by 2.5 mg instead of 5 mg tomorrow for 2 consecutive days then stay on every two dose decreases for a week. That's the plan.
So far I've experienced few symptoms and almost no bad symptoms of these steroids and the tapering with how I'm handling it. I admit though it was difficult to get a doctor to give me Valium to counter the major symptoms I get with steroids (extreme insomnia and moderate anxiety). They wanted to put me on shorter acting stronger drugs for those symptoms, and ambien didn't work because it was in my system for too short a time. It only takes a very low dose Valium (2.5 mg or less) to get me sleeping and carry me through the next day. It's a long acting drug. It's also far easier to come down from. My GI left that up to my primary care doctor to prescribe - I may be ending that today actually (only a month on it) and using the ambien (half dose) only if I can't fall asleep. I think that should work now that I'm on half the steroids I was on when this all started.
My opinion is that steroid tapering should be tailored to the person taking it, they must have very frequent communication with a medical professional on how they're feeling as they dose down so that the doctor can make these changes that I am making on my own. I'm lucky to have a doctor like this and the brains for it. I went through so much difficulty tapering down years ago because I trusted that fast taper with my doc was good, but it put me through hell and this time it's going so amazingly well.
I may check back in when I get down to 10 / 5 mg as that's going to either be easy or hard -- I get increased bowel symptoms when I'm at that point, but my adrenal glands should be pumping most of what it needs by then. It's obviously working based on what I felt today - but my body wasn't used to being on 5 mg less a dose, but it adapts pretty quickly. It usually takes me 3 or so months to taper off prednisone after being on a high dose for 1 - 3 weeks before the tapering.