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Medical Forum / Diseases and Disorders / Arthritis / September 2005

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question on tapering prednisone

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Diane - 25 Aug 2005 03:14 GMT
hi guys,
i need some help for john. he's been on prednisone for crohns and i
can't remember how he should taper off. his doc is useless. back in
february, john was started on 60 mg pred, tapering off five mg every
week. so in june, he was on 5 mg and then went immediately to zero. no
surprise to me when he flared. he was then put on 40 mg and has been
tapering off again 5 mg per week. tomorrow, he is theoretically
supposed to drop from his last 5 mg down to zero again, and i refuse to
let him! his doctor's an idiot. but i can't remember how one tapers
from that last 5mg. can anyone suggest a schedule that will hopefully
prevent a flare?

thanks,

diane
Jo Firey - 25 Aug 2005 03:51 GMT
> hi guys,
> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 11 lines]
>
> diane

I think I remember either doing 2 1/2 or doing every other day.  Pretty sure
it was every other day, for about ten days and then every third day and then
off.

Jo
Bruce - 25 Aug 2005 15:17 GMT
This is how my Resp and RD both taper me off.  When I talk to them it's as
if they are reading off the same page,  Almost seems as if the Health
Sciences Center has an established protocol.
Bruce

Signature

I believe in the separation of Church and Hate

>
>> hi guys,
[quoted text clipped - 18 lines]
>
> Jo
Joan Carter - 25 Aug 2005 04:44 GMT
>but i can't remember how one tapers
>from that last 5mg. can anyone suggest a schedule that will hopefully
>prevent a flare?

My RD tapered me very slowly, 4 mg. for 4 or 5 days, then 3, then 2 then 1. All
doses were for 4 or 5 days. He prescribed 1 mg. tabs for the taper. There are
many ways to do it, but slowly is the way. It takes the adrenals quite a while
to go  back into production. They usually generate about 5 mg. a day according
to my RD.

---
Joan
Butterfly - 25 Aug 2005 05:10 GMT
My Dr has me at 6 MG, then down to 5.5MG for another month then 5MG for
another month. I have been on Prednisone plus other meds for over 6 years.
He said not to be too surprised if I can 'never' get off it entirely. Tried
going down 1 full MG and went right back into a flare so he upped me to
where I had been then started the tapering off at .5MG and I didn't flare,
so that is how I am doing it now. It may take longer to get off but it may
also mean I can stay off once I am. My body has become very sensitive to
medicine. HTH

Butterfly

> hi guys,
> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 11 lines]
>
> diane
Lyn - 25 Aug 2005 13:37 GMT
If your doctor is useless, check with the pharmacist, they know more
about drugs than the average doc anyway.
Lyn

>hi guys,
>i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 13 lines]
>
>  
spodosaurus - 25 Aug 2005 14:26 GMT
> hi guys,
> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 11 lines]
>
> diane

I break my tablets in half and do 5, then 2.5, and keep alternating for
that week. Then 2.5 for the next week. Then, 0 or alternate 0 and 2.5. I
believe there are 1mg tablets to be had. Obviously there's a need for
them or the drug manufacturers wouldn't have a profit incentive to make
them! Too bad his doctor hasn't figured out about individual differences
yet :-(

Ari

Signature

spammage trappage: remove the underscores to reply

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

nikki - 25 Aug 2005 15:53 GMT
Hi Ari,

I do it the same way, except that instead of 1 week I do that in 3 weeks
(for example 7 and 5 every other day for 3 weeks, then 6 weeks 5, then 3
weeks 5 and 2,5 every other day and so on), always the first 2 weeks of
the 6 I'm okay, then 4 weeks for my body to cope with more pain and
start making the "natural prednison" again,  and after that I am okay.
But 5 mg is minimum for me, combined with Enbrel every 4th day. That way
I hardly every have to take painkillers anymore. That and enough rest.
I've tried the 2.5 mg for 2 months but that just wasn't working.

Nikki

>> hi guys,
>> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 19 lines]
>
> Ari
Alison DeLorme - 26 Aug 2005 02:29 GMT
I think it really depends on how long hie's been on it. If it hasn't been
more than a couple months, he can do it quciker - 1 mg drops every 3-5 days.
But if he's been on it for 6 mths or more, it's best to go REALLY slow,
partic. from such a high dose. Get the 1mg tabs and split them in half. Go
down a .5mg each week. Sometimes you have to even do weeks with alternating
days. (ex. 2mg, then 1.5mg, then 2mg for a week before going down to 2mg for
the whole week). I was on pred for 4 years and it was a bear to get off of
it. It took forwver to get down from 2.5 mg. I'd go down a 1/2 and begin to
flare. But I finally made it... been off it for 3 mths now. I had what i'd
call a mini flare, where I'm swelling more than before but it was important
for me to get off the pred so I'm living with it and thanking everything
under the sun that it wasn't a full flare. good luck

alison
Diane - 26 Aug 2005 20:17 GMT
thanks for your input, alison. by the way, i'm seeing dr zorn for the
first time next week. the PCP i found said she's wonderful, so i'm
excited i found a good one (with your help).

diane
Newsgroup Spambuster - 27 Aug 2005 07:37 GMT
I have tapered down at times as slow as
1 mg per month.   Hope the taper this time around works for John.   I
imagine with all the packing, moving, unpacking, that it might be a bit
more difficult to get down on the pred without flaring things up.   Take
it slow and know that we are praying that things work out for the best!

Hugs!

Donna G
Alison DeLorme - 28 Aug 2005 05:53 GMT
glad to hear you got an appt. My neighbor just went as well and was
impressed. BTW, he got in very quickly b/c his wife called to say he was
doing really bad and could they try to sqeeze him in. He got an appt. within
three week, instead of 2-3 months. Just a hint incase you need to see her
quickly in the future...

alison
Chris Malcolm - 26 Sep 2005 15:05 GMT
> hi guys,
> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 7 lines]
> from that last 5mg. can anyone suggest a schedule that will hopefully
> prevent a flare?

The schedule that will prevent a flare is one that isn't a schedule
you try to stick to, but a flexible plan that retreats at the slightest
suspicion of an impending flare.

If your adrenals have shut down due to high pred dosages for some time
then kickstarting them can be very difficult. The difficult period
happens around the replacement dosage, which is somewhere between 5mg
and 10mg/day for most people. For me it was 6mg/day. I eventually
settled on a strategy of shifting to alternate day dosages, the idea
being that the residual anti-inflammatory effect of pred lasts a lot
longer than the actual drug stays in the system, so you can take it
every other and stay clear of flares, while giving your adrenals a
regular prod in the backside on the days you take nothing.

So when I was on 6mg/day, which my rheumatologist said I'd obviously
need to be on for the rest of my life, I started by cutting down the
dosage 1mg at a time, only on alternate days, i.e., my first cut would
be 6mg one day, 5mg the next, then 6mg again. Then I'd go to 6 and 4,
and so on.

I discovered by experiment that if I was going to flare I would start
feeling increased joint pains and stiffness in about ten days after
reducing the dosage. So my strategy was to reduce dose, and wait for a
fortnight. As soon as any signs of an impending flare appeared, I'd
shift back to the previous dose, with an initial one time bonus dose
of +2mg to help dampen the flare. I regard flares as being damaging,
and to be strenuously avoided.

If the reduction was successful I'd make another one. Eventually I got
down to 6mg every other day. Then I started cutting down on that in
the same way.

When I was taking 1mg every other day my doc refused to believe I
could tell the difference between that and taking nothing, but
fortunately he was prepared to humor me and keep prescribing.

Once I'd got completely off, every now and then I'd feel a flare
coming. I'd deal with it by a once only dose of 2mg, or if it was
really bad, 4mg.

Those once-only control doses were necessary at intervals of several
weeks for several months. They gradually got less and less frequent. I
assume that was because the maximum capacity of my adrenals to cope
with occassional emergency demands was increasing.  They now seem to be
necessary once every few years, usually if I have a nasty viral
infection.

Just in case it helped, I also made a point of taking scary exercise
every now and then, such as climbing a cliff or running down a scree
slope. I hoped that would be giving my adrenals a prod. I did notice
that scary exercise was always good for chasing joint pains away, much
better than just plain vanilla non-scary exercise.

Signature

Chris Malcolm cam@infirmatics.ed.ac.uk +44 (0)131 651 3445 DoD #205
IPAB,  Informatics,  JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK
[http://www.dai.ed.ac.uk/homes/cam/]

Diane - 26 Sep 2005 16:54 GMT
lol, chris! your scary exercise theory is fascinating, and i'll pass it
along to john.
one thing asking this question has taught me is how individulized
getting off prednisone needs to be. now that we're in raleigh, john has
a new doc who understands that and he is taking 2.5mg for another
month, then every other day, then supposedly off. i think he may need
to work down even a little slower than that, but we will see and watch
for those flares. thanks for your input,

diane
Paul Heizer - 26 Sep 2005 17:00 GMT
Thank you for taking the time to share some very important information,
which I am sure I will be needing in the future.
Judy H.

>> hi guys,
>> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 60 lines]
> that scary exercise was always good for chasing joint pains away, much
> better than just plain vanilla non-scary exercise.
spodosaurus - 26 Sep 2005 17:34 GMT
>>hi guys,
>>i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 21 lines]
> every other and stay clear of flares, while giving your adrenals a
> regular prod in the backside on the days you take nothing.

My haematologist suggested this very thing last Friday. I NEED to get
off the pred...but it may be the thing that's keeping my counts up at
this point, and I'm worried about tapering because we don't know what
aspect of pred's function (broad based immunosuppression and
anti-lymphocyte effects, anti-inflamatory, other?) is keeping my counts
up. We're not even sure that staying on the pred will keep the counts
up. I was started on it for something else, and so we're not sure if it
was a change to my aplasia treatment or the introduction of pred that
has given me the semi-good results recently.

Cheers,

Ari

Signature

spammage trappage: remove the underscores to reply

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

Navy1 - 26 Sep 2005 22:51 GMT
That is so wonderful, Chris.  The best health care we can give
ourselves is to know our own limits and how far we can push the
envelope.

Loujean

>> hi guys,
>> i need some help for john. he's been on prednisone for crohns and i
[quoted text clipped - 60 lines]
>that scary exercise was always good for chasing joint pains away, much
>better than just plain vanilla non-scary exercise.
 
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