Re: Speaking of Weaning Off - What about Pain Meds?

[Guest guest]

Hi OKD.  I am only taking pain meds. a few times now, due to my foot surgery. 

Before I was in my remission, I took them several times  a day for a long

time.  It did help but the pain never really went away.  I did not have any

problems getting off them.  I just decreased the amount and then altered my

days when I took one.  I could never have had any type of a life without them

at that time.

 

I know you are going through a lot of pain right now.  I feel badly for

you and anyone here who is dealing with that awful RA pain.  I am the type

that will take what I need to get through a day.  When I first got diagnosed

with RA, I was in such horrific pain everywhere, that I thought I would lose my

mind.  I had no life what so ever.  I believe in taking whatever the Dr.

prescribes for us to ease our pain and suffering.  Prednisone and RX pain meds.

were so necessary for me as I could not get out of bed without them.  I never

worry if they are addictive etc.  I will cross that bridge when I need to.  I

find pain very wearing both mentally and physically, and can only take so much

of it.  My Rheumy is so caring and wonderful, she does everything she can to

make me feel better.

 

I so hope you begin to feel better soon, and that your pain eases for you.  I

truly thought I would never be out of that pain.  Remember, never give up hope

that you will be in a remission some day with the right " cocktail " of meds.  It

is possible as I am living proof of that.  It took a long time to find the

right " cocktail " of meds. for me, about 4  1/2 years.  I have been in my

medicine remission now for over 1  1/2 years, and I give thanks to God everyday

for that.  How long this will last I do not know.  I am very grateful for

however long this lasts.

 

I wish you and everyone here better days ahead, and pain free days too.  It is

a hard road we walk, but we are all trying to beat this ugly beast called RA. 

It is truly wonderful how all of us here care about each other.  This group

makes my life so much richer with love and support.

 

Hugs,

 

Barbara

[Guest guest]

I've never been on pain meds long term but was taking 2-3 percocet every 2 hours

for 4 months (and was still in pain) and my Dr decided at a visit he didn't like

me being on pain meds anymore.

So he refused to write me a prescription. I had a few days of migraines on top

of my other pain but I lived.

I think pain causes stress and sleepless nights. Stress and sleepless nights

cause flares. If you're in pain it needs to be dealt with!

Candace

No shadows to depress you

Only joys to surround you

Many friends to love you

God himself to bless you

These are my wishes for you,

For today, tomorrow & everyday.

Sent from my iPhone

On Aug 6, 2010, at 8:48 AM, " OKD " <Cofade_2000@...> wrote:

> Hi Group:

>

> All this talking about weaning off predni, and I began to think...will we ever

be off Pain Meds. At first, my paid was sometimes unbearable, so I went to

Pain/Palliative Care Management and BOY did she help me...with Opana (Morphine),

I take 40 mgs a day and sometimes I still have pain, but its tolerable and

manageable, but I wonder....will I ever get off it?

>

>

>

[Guest guest]

Amen!  I agree with you wholeheartedly.  I take and need pain meds on a

regular basis & can't phantom my Rheumy just taking them away without any other

solution to my pain first and at least a discussion regarding what else might

work.  I'm so sorry to hear you had to endure this.

 

Heidi in Denver

[Guest guest]

Barbara

 

What cocktail of meds are you taking?  Curious as I have not found mine, yet. 

I, too do not worry about the meds prescribed for pain.  If I need them to

function, which is most days; I take them. I'm going to try another drug

study (starts in September).  I hope it works as no other meds have to control

my RA.  I would love to be in a remission.  It's been so long since I didn't

feel pain.  I hope everybody is doing well and enjoying each day as best you

can.

 

Heidi in Denver

From: Barbara Creedon <bcreedon@...>

Subject: Re: [ ] Speaking of Weaning Off - What about Pain Meds?

Date: Friday, August 6, 2010, 2:49 PM

 

Hi OKD.  I am only taking pain meds. a few times now, due to my foot surgery. 

Before I was in my remission, I took them several times  a day for a long

time.  It did help but the pain never really went away.  I did not have any

problems getting off them.  I just decreased the amount and then altered my

days when I took one.  I could never have had any type of a life without them

at that time.

 

I know you are going through a lot of pain right now.  I feel badly for

you and anyone here who is dealing with that awful RA pain.  I am the type

that will take what I need to get through a day.  When I first got diagnosed

with RA, I was in such horrific pain everywhere, that I thought I would lose my

mind.  I had no life what so ever.  I believe in taking whatever the Dr.

prescribes for us to ease our pain and suffering.  Prednisone and RX pain meds.

were so necessary for me as I could not get out of bed without them.  I never

worry if they are addictive etc.  I will cross that bridge when I need to.  I

find pain very wearing both mentally and physically, and can only take so much

of it.  My Rheumy is so caring and wonderful, she does everything she can to

make me feel better.

 

I so hope you begin to feel better soon, and that your pain eases for you.  I

truly thought I would never be out of that pain.  Remember, never give up hope

that you will be in a remission some day with the right " cocktail " of meds.  It

is possible as I am living proof of that.  It took a long time to find the

right " cocktail " of meds. for me, about 4  1/2 years.  I have been in my

medicine remission now for over 1  1/2 years, and I give thanks to God everyday

for that.  How long this will last I do not know.  I am very grateful for

however long this lasts.

 

I wish you and everyone here better days ahead, and pain free days too.  It is

a hard road we walk, but we are all trying to beat this ugly beast called RA. 

It is truly wonderful how all of us here care about each other.  This group

makes my life so much richer with love and support.

 

Hugs,

 

Barbara

[Guest guest]

I'm curious also about long term pain meds.  I've taken vicodin since March

2009, which isn't considered long term, but what is " long term " ?  I found it

impossible to perform at my job without my pain meds.  I can't imagine not

having them to function.  Not working right now, but I'm hopeful that I will

find something.

 

Heidi in Denver

From: OKD <Cofade_2000@...>

Subject: [ ] Speaking of Weaning Off - What about Pain Meds?

Date: Friday, August 6, 2010, 1:48 PM

 

Hi Group:

All this talking about weaning off predni, and I began to think...will we ever

be off Pain Meds. At first, my paid was sometimes unbearable, so I went to

Pain/Palliative Care Management and BOY did she help me...with Opana (Morphine),

I take 40 mgs a day and sometimes I still have pain, but its tolerable and

manageable, but I wonder....will I ever get off it?

10 months into this " gig " and I dont feel like I am in a remission, since every

day is different......

Should I be worried about this? Does it matter if you take pain meds long-term?

5mgs of predni daily dont seem to be causing me troubles, so far either.....I

just wonder about the long-term.

Has anybody here taken pain meds long time?

OKD

[Guest guest]

I think Candace is right about pain and sleepless nights causing flares. I try

to avoid sleepless nights as much as possible because they make me feel so bad.

My Rheumatologist says sleep is so beneficial and so important in how you feel.

Here is what I have found that works for me. I don't eat anything with sugar

(even fruit) after 4 pm. I try to eat my dinner by that time also so I go to

bed with an empty stomach. If I do need something, maybe a piece of cheese is

enough to quiet the pangs.

For me....and I do realize everyone is different, sugar is the culprit. It

just fires me up mentally and when I try to sleep, it is miserable with the

restless legs that keeps me moving around in bed. Thank goodness my husband is

tolerant. If I have pain, I might take 2 Aleve before going to bed so I will

stay asleep. That works for me. Hope it works for you.....

Rojo

[Guest guest]

Hi Heidi.  For my RA I take 2 Placquenil, 6 Sulfasalazine, 10 mg. Pred. each

day.  I inject my MTX, .08 on the needle, and 2 Leucovrin pills 24 hours after

I inject my MTX.  It took awhile to finally find the right dose etc. of all

these meds.  I have been in a full remission for over 1  1/2 years now. 

About a few months ago I was having a lot of RA pain in my feet and hands, so my

Rheumy increased my Pred. from 5 mg. a day to 10 mg.  It took care of all my

pain and swelling.  I will begin to cut down my Pred. after my Rheumy visit

next week.  It does take a long time to find out what really works and what

doesn't.  I feel good but am really tired a lot.  I do rest a lot and just

have to give into the tiredness.  I am miserable without enough sleep.  My

Rheumy told me resting is so important when you have RA.  I lie down a lot even

if I don't sleep, I am resting.

 

My feet were hit the hardest with RA, so when I lie down, I keep them

elevated.  Before, there were days I could not get out of bed or stand on

them.  The pain with them was the worst for me. Some days I literally wanted to

chop them off.  No pain meds. dented that pain.  I really thought I would lose

my mind trying to bear the pain.  They are so much better, but I can only walk

so much before they hurt.  I use the elec. cart in the stores and that makes my

life easier.

 

I hope you do find your right " cocktail " of meds. so you can have a painfree

life.  I have no idea how long this will last, but I am most thankful for this

time.  My Rheumy started with one med. to see how I tolerated it.  She got to

the last increase in all the meds. and then it started to work for me.  All my

meds. agree with me and my blood work is always great.  I do get blood work

every 2 months so she can monitor me.

 

Wishing you great success in your journey to find the right meds. for you. 

Take it slow and please rest as much as you can.  You can have a good life in

the future, we just have to work around the RA.

 

Hugs,

 

Barbara