Prednisone withdrawals..when does it get better

Poppie, that sounds serious, the rash and the pain in your feet. Have you been to a rheumatologist? I know one of the signs of Lupus is a facial butterfly rash... I have had some pretty severe withdrawal myself with pred, but usually the worst symptoms for me were when I was on the higher doses. It always took time to get back to a normal state after getting off pred too. I've heard people say, the longer your on, the longer it takes to regain normalcy. Since you were on for a year, I wouldn't be surprised if it takes a couple months unfortunately. Hopefully you start seeing steady improvements soon. I am really happy to hear you're off!!!! That is amazing news in itself.

nssg...I looked online and my rash is nothing like a butterfly rash thankfully! my rash is almost transparent and it is around my hairline and a bit under my eyes, and it feels like fine sandpaper, it has actually got a bit better over the last couple of days so maybe it's on its way out.

The feet thing is the same ache that I have all over my body but its just a bit more intense. When I sit in a chair for only an hour I am stiff as a board when I get up. For now I am just going to have to suck it up and hope it wont be more than a couple of months.

iPoop...Thanks, I will see how I get on over the next week, hopefully, it might ease up. I hope it is not a reaction to the Humira, but I think it has to be the withdrawals.

I'm sorry it has been so rough on you Poppie. I've heard of people taking like 5mg jolts to "awaken" their adrenal glands but it sounds like you've already thought of that.

I wonder if there are "natural" ways to get your system back on track. Like certain foods or exercise or something?

I started a 40mg dose in April and have been going down 2.5mg every 2 weeks. I'm now at 2.5mg and in 10 days I'll be at 0. I'm really hoping I won't have the bad effects I keep hearing about.

iPoop said...

Jayhawk85 said...
I started a 40mg dose in April and have been going down 2.5mg every 2 weeks. I'm now at 2.5mg and in 10 days I'll be at 0. I'm really hoping I won't have the bad effects I keep hearing about.

Only 5-months you'll probably be fine, it's often a year plus that things get tough.

Prednisone is a synthetic version of our body's naturally produced hormone known as Cortisol. While we are on high doses of Pred, our adrenal glands stop producing Cortisol, as we taper down pred the adrenals are supposed to wake back up and start producing Cortisol. Withdrawal is when we don't have enough Cortisol+Pred, or just Cortisol within our bodies. Cortisol regulates our natural sleep cycles (highest cortisol concentration in the early am to wake us up like an alarm clock, and lowest before bed to help us fall asleep), and cortisol is also a mild pain reliever handing minor aches and pains within our bodies.

Typical withdrawal symptoms are fatigue and/or body aches/pains. There's temporary 2-3 day withdrawal possible when you drop to a lower dose of pred, generally pretty minor. There's temporary withdrawal after ceasing pred that should last a couple weeks or less, and that can be more moderate. After multiple weeks of ceasing pred you can have continued withdrawal due to your adrenals not waking up or producing an insufficient amount and that's when you typically need an Endocrinologist's help. There's a few tricks you can try before seeing an Endocrinologist, like going temporarily back on pred at 5mgs, or so, and alternating up and down dosages day-to-day (5mgs one day, 2.5mgs the next, 5mgs the next day, and so forth), and then going back to zero more gradually. Sometimes that works and other times not. Endocrinologists will follow a similar system, using hydrocortisone, smaller dose drops, and monitor your progress more closely.

Just a good bit of info to put on the shelf, just in case you ever need it.

Thank you very much sir. That is the info I was looking for. I am bookmarking this thread right now!

Prednisone is so strange how it affects people in such different ways. I work with a lady that has Lupus and she tapered so rapidly from YEARS of such a high dose that I don't even bother stating it b/c it would hardly be believable that she lived, much less didn't have terrible complications. Then other people try to taper from a 30mg dosage and suffer a ton.

One of my concerns is that I get headaches and joint pain occasionally and Pred has actually helped them quite a bit b/c like you said Cortisol is a pain reliever in some ways. Gonna need to find a way to relieve those aches, aside from my hippy wife's peppermint oil remedies , once I'm off Pred.

@Jayhawk..thanks for your input, I hope you are okay too when you finally taper down.
@iPoop......thanks again, I always know I am going to get good advice from you..I appreciate it.
@nssg.......thanks, Yes the rash is still there, but not quite as bad. I am exercising because I am quite porky too!! first time ever, so I have to get rid of that as well. But, when you have been in hospital and really sick, you really just appreciate being well again and the fat issue doesn't seem quite as tragic lol!