tapering from high dosage of prednisone

[gtate1914]

Any suggestions on tapering from 50 mg? Not more than 10% and going down weekly or every 2 weeks if feeling ok? I'm new at this. Any thoughts appreciated. Thanks.

[pwalker801]

I started at 65 mg and 5 weeks later am now at 50. I will be at 50 for 4 weeks before I taper to 45. From what I've learned that it is best to go very slowly, but know every body is different and reacts differently. There are some very educated gals on this site and I'm sure they will respond to you with more information.

[gtate1914 in reply to pwalker801]

Thanks for the input. I was at 60 for about 2 months and today is my fourth day at 50 mg. A little headachy at times but not too bad. And of course tired. Don't want to overdo it. Are you at 50 for 4 weeks because your rheumy recommended that time line?

[SnazzyD]

Hello, I’ve been at this game for 14 months now with GCS only. I have found that giving it two weeks per 1mg at the higher doses is a good idea so that you can work out what is withdrawal and what is a flare. Withdrawal kicks in for me about day 1-4 and lasts for a few days only. If you go too fast, it may be that you overshoot the point beyond which the inflammation has built up again and never know what dose was still ok. I’ve always gone for 0.5mg drops because it seems to smooth out the steps. You may find yourself wondering, “is this a flare is this withdrawal?” but eventually you get used to your body’s signals.

[gtate1914 in reply to SnazzyD]

1 mg per 2 weeks sounds very slow. I thought it was generally ok to drop not more than 10% at the higher doses?? Depending, of course, on how you feel. My rheumy told me to drop 10% every week, but then changed her mind and said every 2 weeks to be safe.

[SnazzyD]

I found I was very sensitive to reductions and was not able to follow the guidelines given. You will find what is acceptable to you, whatever the doc says; we are all different.

[PMRpro Ambassador in reply to SnazzyD]

Was that for GCA level doses of 50mg+ too? 0.5mg drops at that level is VERY slow.

[SnazzyD in reply to PMRpro]

I neglected to say the interval is 5mg not 0.5mg!

[PMRpro Ambassador in reply to SnazzyD]

Thought so...

[DorsetLady PMRGCAuk volunteer]

Hi,

I started at 80mg, 2 weeks later down to 60mg, from then on 5mg a time - sometimes every 3 weeks, but usually 4 - presuming I was okay and no return of symptoms.

Once I got to 25mg I then did 2.5mg tapers, until 15mg , then 1mg until 7mg, then 0.5mg.

Some doctors like you to reduce every 2 weeks, but I feel that you can never be sure that is long enough to know you are okay at that level. It can take that long for a flare to materialise, 4 weeks is safer.

My reduction plan may seem slow to some, but GP agreed to it, and more importantly I never had a flare.

[gtate1914 in reply to DorsetLady]

When you say no return Of symptoms then you drop, do you mean not even a slight headache or jaw discomfort at all? What you call niggles? And by the way, what is the definition of “niggles”? A very slight feeling?

Also, your schedule of dropping, was it the DSNS method when you dropped every 4 weeks if no symptoms? Just making sure I understand this correctly. I think my problem has been dropping too quickly.

[gtate1914 in reply to gtate1914]

I always have those very slight headaches usually the temples, and a little jaw discomfort, is this normal and should it basically be ignored? Unless it’s really painful, of course.

The fatigue and dizziness that sometimes happens, I’m guessing this is most likely the prednisone side effects? And not likely GCA or pmr?

[DorsetLady PMRGCAuk volunteer in reply to gtate1914]

Hi,

I can only say, apart from the first couple of weeks when I still had headaches -and I’m never sure whether that was from me adjusting to mono-sightedness or GCA, but I suspect the former - I didn’t have any problems. That may be down to high starting dose, or me I don’t know.

I did have side effects including some fatigue and dizziness.

My reductions at high doses were done “overnight” so I did get withdrawal symptoms for a few days - that was before I came across the slower taper, plus there is plenty of Pred sloshing around the system so I don’t think it’s as difficult to reduce.

If you are still getting significant headaches and jaw discomfort and are concerned then I think you should discuss with doctor.

The problem is, we are all different, and if we start at different doses and reduce differently there is no perfect scenerio - sorry!

[gtate1914 in reply to DorsetLady]

No, not significant headaches, just slightly, I didn’t know know if there should be any at all ..... I can it up with it. The doc tells me to ignore small headaches and jaw discomfort but she also had me tapering every week which was too fast for me.

[DorsetLady PMRGCAuk volunteer in reply to gtate1914]

She’s probably right on the discomfort, and they may well disappear when you get a more sensible tapering plan going.

You do have to give things time to settle, but certainly don’t let them get any worse!

[Hidden]

Hi gtate1914 , I am currently tapering dow from 80mg and have managed to get down to 45 mg, with minimal issues. (Shhhhhhhhh, fingers crossed!) I have had one failed taper down attempt back in Dec/Jan, but feel Rheumy was optimistic and (as it was my first try) and she was a bit aggressive. This time she is being much more cautious. This is the plan:

I dropped 5 mg every 10 days beginning at 80mg, until I got to 50 mg

I then dropped 5 mg every 30 days beginning at 50mg, until I get to 25 mg.

Once I get to 25mg (September) we will adopt a "Dead slow and nearly stop" regime.

That's the plan... like I said I have my fingers, toes and everything else crossed.

Last taper down I hit 45mg and thought I would die. I had to be jacked up to 80mg to get same relief I had been getting at 60mg! It was awful!

Best of luck to you!!!!

[Hidden]

Hi I was on 60 mg Pred and told to reduce by 5 mg very two weeks then at 20 mg reduce be 2.5 then at 10 mg reduce by 1 mg every four weeks. Seems to be working for me now going down to 10 mg on Thursday

[PMRpro Ambassador]

10% is 5mg to start with where you are and should be fine. Many people are able to manage 10mg at the very high doses. Personally I think every 2 weeks is better otherwise your body never gets to come to a rest between changes - and changing the dose DOES affect you a lot sometimes.

[sharonnorfolk]

I was given a comprehensive sheet, with dates and doses on when I first saw the rheumy.

Maybe yours could do the same for you. Mine reduce every 4 weeks by varying amounts.

[gtate1914]

Thanks for all the suggestions! Today I am on my 5th day on 50mg, originally 60mg, this morning was fatigued and dizzy, feeling a little better this afternoon. Think I do not want to rush this tapering business as much as I would love to do so!

[Ohtobepainfree]

Was on 40mgs, followed Drs instructions tapering 5mgs a month.

Took last one a few days ago, dentist said today takes a good two weeks til out of system x

[PMRpro Ambassador in reply to Ohtobepainfree]

Your dentist should do some pharmacodynamics revision - all the active substance of pred is out of the body in a couple of DAYS at most. The effect holds a bit longer - but even then it is only a few days.

[gtate1914]

I've read on this site that the GCA dose should be taken all at once. Why is that? If headaches, jaw pain started later in the day wouldn't it be wise to take more pred without waiting for the next scheduled dose? Still trying to sort all this out to extent possible.