Re: Pred Taper

[Guest guest]

Hi Kris,

Saying it's sometimes not easy seems like an understatement! After all this

time, it seems like the impossible dream for us. One never knows though,

so we'll keep on trying too. One of these days it's bound to get easier.

I'll be keeping Joe in my thoughts, wishing her the best as she faces this

challenge. I hope she has better luck than we've had. Boy, that sounds quite

resigned?!? It's just that yesterday and today, Josh hasn't been feeling

well. Woke up with no rash but with a fever of 102.2. Not as high as they

used to get, so it may be something entirely unrelated but he doesn't seem

to have any other symptoms of anything except for stiffness and pain in his

feet, wrists, neck, back ... when at 4mgs he seemed to be feeling on top

of the world most days. Could just be coincidence. Or something else going

on. Maybe he's getting a cold or something? Missed a class trip to the movies

today, though. And we postponed plans we had for yesterday, too. I'd just

hate for things to start up again and then to wonder if maybe it might have

been preventable ... if we hadn't tapered down? Argh! I better go. It's one

of 'those' days.

Aloha,

Georgina

bound for london wrote:

Hi,

you've got some great advice here and thought I should chime in. We

have been trying to get off pred for about 19 months now. Currently she is

at 4mg ( our lowest point ever). The pred does control things and hold the

pain BUT it comes with many seen and unseen side effects. our rheumy has

just had two teens in for total hip replacements because of pred so they

are trying to be more aggressive with pred tapers. We now give her ultram

( a non-narcotic pain medicine) with her taper to get her through. Sometimes

we have used Tylenol 3 to get her over the hump. We are hopeful to be off

soon. Our rheumy wants us to go down 1 mg every 10 days, once get to about

5 we are to go down 1/2 mg every 10 days. Some go slower. It is not easy

but we are hopeful that with the knowledge that the pain and swelling will

hit about day 4 and using pain meds to get over the hump should get her off.

We are keeping our fingers crossed. Good luck and try to push through if

you can, knowing that there may be some pain and treat the pain with medications,

ice and/or heat.

e, mom to joe 16 poly

sfrazer31470 <sfrazer@...> wrote:

Hello

all, I'm going to ask the experts about this one since my

daughter was just diagnosed at the beginning of the year. Brittany

is on MTX, Naprosyn, Prednisone, Zantac, Folic Acid. Last Monday 5-

19 tapered her pred from 14 to 13 (can't taper her more than 1 mg at

a time once we get her down to 14) Went to the ped rhuemmy on

Thursday-he did his normal exam working her knees, ankles, arms, etc,

said she had a little swelling in her knees and fingers. Friday her

knees were hurting said it was a 9 on a scale of 1 to 10. We wrote

it off as the doc doing his exam. Saturday knees were not hurting.

Sunday knees were hurting again and she rated it as a 9. I went

ahead and put her back up to 14 on the Pred last night and she said

her knees were hurting a little this morning. Everytime I try to

taper from 14 to 13 on that damned pred she always gets soreness all

over by the next day. This time I don't know if it was due to the

doc's exam or the taper because it took 4 days and it just affected

her knees. Anyway, I'm rambling my question did I do the right thing

by putting her back up and if the knees continue to hurt should I

increase it more and by how much-She has only been on 20 at the

most. She hates this drug more than I do, because of the weight gain

and puffiness in her face. I had to beg her to let me increase it

just 1 mg. She is not running any fevers and she is just finishing

up on antibotic for a sinus infection from a couple of weeks ago so

that is cleared up so I don't think it can be from that. Anyway,

here I am rambling again I just feel that if I miss any info to you

wonderful experts that you might miss something in the advice you can

give me.

Thanks in advance for your answers.

mom to Brittany 12 (poly)

[Guest guest]

Hi Janice.

 

When did you start reducing your Prednisone?  You have to do this very slowly

over many weeks.  If you come off to fast, you will be in so much pain. 

Perhaps this is what is happening to you.  I have tried many, many times to get

off my Pred. but have not been successful.  I will try again soon.

 

Did you Dr. give you instructions how to get off your Pred.?  There was a post

here on Pred. reduction awhile ago, and I am going to try that way.  It was

over a very long time, but made sense to me.

 

I have been in a medicine induced remission from my RA.  My meds. have worked

wonderfully for me.  They all agree with me.  Pred. gave me my life back as I

was so suffering each day all the time.  My RA hit me the worst in my feet,

ankles, writsts, thumbs, and fingers.  I was so swollen and the pain was so

unbearable for me.  It took me 5 years to feel as good as I do now.

I have been in remission is 2 years.

 

I hope you feel better soon.  Maybe you need to go back to your original dose

of Pred., get feeling better, then start your dose reduction..  That is what I

have done before.

 

Take care of yourself, and rest as much as you can.  It does help a lot.

 

Hugs,

 

Barbara 

[Guest guest]

I was only on pred for 2 weeks at 15 mg and then I started tapering as I started

MTX. My pred taper has been 1/2 tablet every two weeks. I was supposed to

continue that until I was off. I am now thinking that I need to go more slowly.

I am on 5 mg in the morning now and I didn't really have much problem getting to

this point. I was thinking for the second week at 5 mg to split the dose to 2.5

in the morning and 2.5 mg. in the afternoon. Then the following week when I am

supposed to go to a total of 2.5 mg. to just drop the afternoon dose every other

day and not drop the afternoon dose completely until the following week after

that. At that point, I will be at 2.5 mg. total and maybe the next drop needs to

be 1/4 tablet for 2 weeks and then done. That is more slowly than the doctor

said, but I definitely do not want to increase and start all over if I can at

all help it.

Always happy to hear reassurance from someone in remission. Thank you!

Janice in GA

>

> Hi Janice.

>  

> When did you start reducing your Prednisone?  You have to do this very slowly

over many weeks.  If you come off to fast, you will be in so much pain. 

Perhaps this is what is happening to you.  I have tried many, many times to get

off my Pred. but have not been successful.  I will try again soon.

>  

> Did you Dr. give you instructions how to get off your Pred.?  There was a

post here on Pred. reduction awhile ago, and I am going to try that way.  It

was over a very long time, but made sense to me.

>  

> I have been in a medicine induced remission from my RA.  My meds. have worked

wonderfully for me.  They all agree with me.  Pred. gave me my life back as I

was so suffering each day all the time.  My RA hit me the worst in my feet,

ankles, writsts, thumbs, and fingers.  I was so swollen and the pain was so

unbearable for me.  It took me 5 years to feel as good as I do now.

> I have been in remission is 2 years.

>  

> I hope you feel better soon.  Maybe you need to go back to your original dose

of Pred., get feeling better, then start your dose reduction..  That is what I

have done before.

>  

> Take care of yourself, and rest as much as you can.  It does help a lot.

>  

> Hugs,

>  

> Barbara 

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[Guest guest]

I was on prednisone for just a few months, while waiting for MTX to

kick in. I was on a low dose, I think just 5 mg. It wasn't hard at all

for me to taper off, because of the low dose and short time I had been

on it. When I learned about all of the bad side effects, I decided

that it wasn't for me.

Sue

On Apr 1, 2011, at 12:51 PM, jjo193 wrote:

> I was only on pred for 2 weeks at 15 mg and then I started tapering

> as I started MTX. My pred taper has been 1/2 tablet every two

> weeks. I was supposed to continue that until I was off. I am now

> thinking that I need to go more slowly. I am on 5 mg in the morning

> now and I didn't really have much problem getting to this point. I

> was thinking for the second week at 5 mg to split the dose to 2.5 in

> the morning and 2.5 mg. in the afternoon. Then the following week

> when I am supposed to go to a total of 2.5 mg. to just drop the

> afternoon dose every other day and not drop the afternoon dose

> completely until the following week after that. At that point, I

> will be at 2.5 mg. total and maybe the next drop needs to be 1/4

> tablet for 2 weeks and then done. That is more slowly than the

> doctor said, but I definitely do not want to increase and start all

> over if I can at all help it.

[Guest guest]

Hi Janice

Wow! I'm going through the same thing right now!  I've been on MTX  for 3

weeks.  I was taking 10 mg of pred until  I was having trouble sleeping. So my

rheumy dropped the pred to 5 mg.  After that my condition worsened a little. 

I

talked to him two days ago to review my labs. Seems my inflammation is down, and

my other labs were OK.  So he upped me to 7.5 mgs. pred.  While all this was

going, on had begun to excercize as well, and was thinking maybe I needed to

pace myself more.  But today when I took my pred I expected to feel much better

and I didn't.  Maybe it's the weather!  Anyway, I guess the MTX hasn't kicked

in

yet.  I read that it takes a few weeks.  I will  be seeing my rheumy in 2

weeks

and we'll find out what he thinks!  Good luck to you!

Amy

________________________________

From: jjo193 <jjo193@...>

Sent: Fri, April 1, 2011 10:23:35 AM

Subject: [ ] Pred Taper

 

I have been on MTX for 2 months, I will take my 4th full dose of 17.5 mg

tonight. I have been reducing from a high of 15 mg. pred. down to 5 mg. last

Sunday. I have been having aches, but I have also been exercising more. I

decided to take 2 days to rest and not exercise to see if that was causing the

aches. I feel worse today. That stiffness when I get up from a chair is back. It

is not major, but it was gone and now it isn't. Is this a transition between

tapering the pred and the MTX kicking in? Should I be thinking I need an

additional med? Is my RA flaring and causing damage? Should I expect to feel

better as my body adjusts to the drop in the pred? I am determined to stick and

through and get off the pred. Just wondering what others have experienced at

similar stages. Do you take ibuprofen or other NSAIDs to get through this? I saw

the rheum last Friday and he didn't feel any inflammation, but the blood test

results aren't back yet.

Janice in GA

[Guest guest]

Yes, you are right to decrease ever so slowly.  I have gotten down to one Pred.

5mg a day, and all my symptons and pain returned in full force.  I am

determined to try again to get off it.  I shall see this time as I will go much

slower then before.

 

Good luck with tappering off. 

 

Hugs,

 

Barbara

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[Guest guest]

Amy. I definitely felt better today as the day went on. It is so confusing to

figure out what is the medication, the disease, our attempts to fight the

disease by exercising....uuggghh!! What i have read on other blogs is that if

you can stick it out, the pred taper aches do get better in a week or so. Of

course, if they are so bad you can't function, that's hard to do. Mine are not

to that point at all. Just bothersome and worrisome. I have also read MTX can

take months for some people, so we need to try to have patience and not panic, I

guess. I cut out refined sugar the day the doctor put me on pred and I have

been good with sticking to it. I also cut out junk food and have actually lost

5 pounds. Today someone brought in gourmet cupcakes to work and they looked so

pretty, but I didn't even want one. Just another weapon in the fight against the

RA monster. Good luck back at you!

Janice in GA