Tapering from Prednisone

[arcr]

I have a question....if the doctor tapers from Prednisone too quickly and one has a small flare up, how is that usually adjusted in your experience? Thanks for your feedback.

[Vo321]

Hi, I would assume that the prednisone would be increased until you're out of the flare. I was initially on 50mg of prednisolone in November last year. I'm now on 20mg and will go down to 10mg next week, so I've been tapering about every 3/4 weeks.

[jayf]

Vo321 has a valid experience. And good input. Interesting to read. thank you.

My own( I have Wegener's) follows this pattern : Medium flare up, pred goes up to 20 to 30.

stays there til it switches off the symptoms for around 2 weeks, then goes down at this rate(usually) 30mg to 25mg. for 10 days. then 25 to 20 for 10 days. Then 17.5 for a week. if all ok then 15mg after a week. Then a pause for a couple of weeks. Then 12.5mg for 2 weeks. Then 10mgs for up to a month. This is often my tipping point btw. Then 8.5. then 8mgs. Then God willing 7.5mgs as my maintenance dose. Then time to lose the 15kgs I put on!

Small flares you can manage by upping maybe by up to 50%.

Hit it fast. Soon as you feel you can't get out of bed and want to sleep round the clock up the steroids and call your consultant/nurse.

By the way everybody: I have read that pulses and lentils are top of the NO NO list of foods. I was taken aback. Also sugar. Paul McKenna wrote a great book a year ago backed up with the leading consultants in their fields, about quitting sugar. I recommend it.

I'm at the London Lupus Centre at Guys Hospital if thats of any interest.

Good luck. Accepting we are probably going to have to take steroids for most of our lives is a tough one. It took me maybe 5 years. 10 years ago. I still dislike what they do to our bodies and personalities. But they keep us alive. I keep reminding myself.

x

[arcr in reply to jayf]

Agree so much about accepting steroids...rather difficult.

[RareStap in reply to jayf]

I'm with the Lupus Centre at Guy's as well! I have been on steroids for over 30 years and then took a turn to CSS 4 years ago. The wretched things have saved my life - I was down to 6 but have had a slight flare which is now under control, and I think 7.5 is where I must stay now. I am 72 and yes, steroids have taken their toll, my skin is so thin and I am covered in scars, but I heal well. There aren't too many other disastrous results so I have to write in praise - its sad they put on weight but at a maintenance dose, its not too bad. I read so much about people who are desperate to get 'off', it takes over their life. I tried for years and years and never succeeded even before CSS, so i'm saying 'hats off' to the little bitter tasting pill!!!

[arcr in reply to RareStap]

Thanks ! You give me hope!

[AmyS1]

Addenbrookes usually says add 20mg to whatever you are on for 3 days. Then next 3 days reduce to 10mg more than what you were on before. Then go back to just above the level at which the flare occurred. But it is best to speak to your specialist nurse. Each type of vasculitis is different as are the combination of medicationa that people are on.

[arcr]

Thank you so much everyone

[Jan22]

I have Wegners when I flair I double the dose of prednisolone that I am on for 2 weeks then taper slowly. Interesting two hear what others do