Re: pain or no pain

[Guest guest]

I know mine is intermittent but ohhh yes it makes me cry at times too when

things are bad.

Sue

" P.A.T.C. " <endura@...> wrote:

From: <betnden@...>

Date: Thu Jan 11, 2007 9:32 pm

Subject: Re: I have to disagree galaxiexl68

Offline

Send Email

Invite to 360°

I've always wondered about the ones that report no pain when

dealing with

RA. Of the ones I know personally, all have moderate to severe pain

constantly. So, a question for the group. How many, or better yet,

what

percentage of us have no pain, moderate pain, or severe pain? I would

think

that those of us with aggressive RA would have more pain than the

others. I

know mine brings tears to my eyes.

*******************************************************************

Greetings

I don't remember a day I did'nt have pain, I have dealt with pain in

some parts of my body everyday for most of my 50 years.

I know I have osteo arthritis in my hip,and low back, RA possibly in

fingers , feet, neck and where ever it wants to spring up during a

flare up, and God forbid all my aches and pain decide to do so at the

same time, that is when I feel like shooting myself...........if 1 is

extreme pain and 10 is slight pain I would say I am in the 4 to 8

range daily. Most of the time my pain meds do squat for me, I have to

remind myself that I had taken something and that I must wait till

next dose is due, I just use Ibu 800mg 3x day and 2 darvon at night,

and a whole shit pot full of vitamin/herbal stuff I try, but that

don't seem to take the edge off and so I just suffer, I have been

trying a new herbal/vit mix for pain this week and I must say I am

quite surprised at the results. I so far havent had a pain pill in 3

days even with my swollen knee, that is a new problem that I must now

deal with, although we have a major cold front coming in and I have

the tell tale signs that my joints could be in pain ..but they are

just mild so far , I am beginning to be hopeful. My pain level now

is 2 or 3 and so the edge has been taken off for now and hopefully

this will be a permanent thing,if so I am a happy gal.

for what it worth

Pat in the Ozarks

---------------------------------

Everyone is raving about the all-new beta.

[Guest guest]

The replies I've read so far are a surprise to me in a way. It seems that

the ones that did reply are the ones that have lots of pain, not ones that

have little to no pain. Apparently these folks are the exception, not the

rule.

When I was researching RA after I first was diagnosed, the only things I

could find were statistics and articles about it happening almost

exclusively to women, and then only in the wrists and ankles with some in

the knees, but not bad enough to keep them from working. I don't know where

the info was coming from, but it was obviously tainted, but was used to

decide my future for me. I just didn't want to continue to work, so they

thought.

So far, there's only one person that reports no pain, the one that gave me

the idea. All the other posts are from the " typical " RA patient. We hurt a

lot but still keep going to at least some extent. Women are made to handle

pain a lot better than us men, but I'm seeing that may not be as true as I

had believed. I think the result is that " all of us need a long, long hug " !

That makes it better, doesn't it, no matter how bad we hurt?

Pat, the pain chart lists pain from 1 to 10, no pain to too much pain. My

normal day starts at about 6-7 and goes up depending on what I do that day,

and I'm on Morphine for pain. Sometimes it doesn't seem to help. You might

share your 'mix' of herbal meds, it may help one of us. You are truly

blessed if it's helping you.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: I have to disagree galaxiexl68

Offline

Send Email

Invite to 360°

I've always wondered about the ones that report no pain when

dealing with

RA. Of the ones I know personally, all have moderate to severe pain

constantly. So, a question for the group. How many, or better yet,

what

percentage of us have no pain, moderate pain, or severe pain? I would

think

that those of us with aggressive RA would have more pain than the

others. I

know mine brings tears to my eyes.

*******************************************************************

Greetings

I don't remember a day I did'nt have pain, I have dealt with pain in

some parts of my body everyday for most of my 50 years.

I know I have osteo arthritis in my hip,and low back, RA possibly in

fingers , feet, neck and where ever it wants to spring up during a

flare up, and God forbid all my aches and pain decide to do so at the

same time, that is when I feel like shooting myself...........if 1 is

extreme pain and 10 is slight pain I would say I am in the 4 to 8

range daily. Most of the time my pain meds do squat for me, I have to

remind myself that I had taken something and that I must wait till

next dose is due, I just use Ibu 800mg 3x day and 2 darvon at night,

and a whole shit pot full of vitamin/herbal stuff I try, but that

don't seem to take the edge off and so I just suffer, I have been

trying a new herbal/vit mix for pain this week and I must say I am

quite surprised at the results. I so far havent had a pain pill in 3

days even with my swollen knee, that is a new problem that I must now

deal with, although we have a major cold front coming in and I have

the tell tale signs that my joints could be in pain ..but they are

just mild so far , I am beginning to be hopeful. My pain level now

is 2 or 3 and so the edge has been taken off for now and hopefully

this will be a permanent thing,if so I am a happy gal.

for what it worth

Pat in the Ozarks

[Guest guest]

Am I the only one then? And I don't mean to say that I have no pain,

just very little.

And I don't have a high threshold for pain, either. I think I've read

that people who have migraines (I do) have a lower than normal

threshold for pain.

I remember when I was having unbearable pain, in my hands, shoulders,

and knees. I couldn't open a jar or bottle; I couldn't squeeze out a

mop, dish rag, or wash cloth. I couldn't raise my arms over my head or

put them behind my back without great pain. I couldn't even cut my own

meat.

And then finally my rheumy found the right regimen for me. I remember

when I went back to him six months after I started on Enbrel, and he

joked, " I've cured her. "

Probably most people who have found a good regimen just get on with

their lives and don't see a need to stay in a support group. But I stay

on because this is such a good group, I like the people in it, and I

can always learn more about our diseases.

I don't know how long Enbrel will keep working so well for me, but I'll

just enjoy it while it lasts. And when I count my blessings every day,

this is near the top of my list.

I wish for all of you in pain some hope and some relief.

Sue

On Friday, January 12, 2007, at 09:06 PM, betnden@... wrote:

>

> So far, there's only one person that reports no pain, the one that

> gave me

> the idea. All the other posts are from the " typical " RA patient.

[Guest guest]

I'm somewhat new to the diagnosis of RA, however believe I had symptoms as long

ago as

last winter when the most horrible tooth-ache like pain in my shoulders, arms,

wrists was

diagnosed as " mild carpal and ulnar tunnel " complicated by " neuritis " . You see,

I've had

fibromyalgia for three years so pain has been my companion even before my RA

diagnosis.

And, I'm still trying to distinguish the two. Both RA and FMS have fatigue

which isn't

painful but debilitates your ability to deal with pain. When my back/neck goes

into spasm

and gives me migraines, that is terribly painful.

Prior to my diagnosis of RA, I knew my pain was beyond FMS as both wrists and

hands

were throbbing, the knuckles on my fingers swelled and my knees and ankles

joined in on

the act (I'd never had these symptoms before).

I'd say that my pain levels change from mild to severe. I still have good days.

I still have

bedridden days. I remain hopeful with my new RA diagnosis that much of my pain

will

ease with the medications I've been prescribed. Granted, I may be overly

optimistic, but

I've learned with FMS that my attitude does play into my pain levels. When I

get stressed

and overwhelmed, it certainly is worse.

Paige

[Guest guest]

Sue, this is an important point. Many people who are feeling very good (and

have RA) do leave. This I know from feedback a and I get when people

unsubscribe.

Also, this group has a membership of over 1700 people now. Granted, not all

are reading or posting, but there are many more lurkers than posters. It's

impossible to know the status of the lurkers.

It would probably be safe to assume that most who post have more problems

than average. One could also probably assume that those who join the group

in the first place have more problems than average.

Not an MD

Re: [ ] pain or no pain

> Am I the only one then? And I don't mean to say that I have no pain,

> just very little.

> And I don't have a high threshold for pain, either. I think I've read

> that people who have migraines (I do) have a lower than normal

> threshold for pain.

>

> I remember when I was having unbearable pain, in my hands, shoulders,

> and knees. I couldn't open a jar or bottle; I couldn't squeeze out a

> mop, dish rag, or wash cloth. I couldn't raise my arms over my head or

> put them behind my back without great pain. I couldn't even cut my own

> meat.

>

> And then finally my rheumy found the right regimen for me. I remember

> when I went back to him six months after I started on Enbrel, and he

> joked, " I've cured her. "

>

> Probably most people who have found a good regimen just get on with

> their lives and don't see a need to stay in a support group. But I stay

> on because this is such a good group, I like the people in it, and I

> can always learn more about our diseases.

>

> I don't know how long Enbrel will keep working so well for me, but I'll

> just enjoy it while it lasts. And when I count my blessings every day,

> this is near the top of my list.

>

> I wish for all of you in pain some hope and some relief.

>

> Sue

[Guest guest]

Dennis, what surprises me most is the " can of worms " I seemed to inadvertantly

open up when I stated that short of a miracle of God or science, RA patients

don't really have a great prognosis for the future. I had no idea it would spur

so much controversy or that anyone would take offense. Based on the books and

websites I've checked out so far, my general impression was that prognosis may

not be as bad as it used to be for RA patients, but it still ain't good. I

certainly have not seen anything but a progression of the disease in my own

case. I had two aunts with RA. One is dead. The other is still living, but

severely crippled.

In spite of this knowledge, I have a good outlook and hope for the future. My

husband is an insulin dependent diabetic whose kidneys and eyes aren't looking

so good. He has other complications as well. I have RA, fibro & Sjogren's. We

both work, have 4 kids in school and are active in the community. In other

words, we are doing what we can to not let our diseases control our lives;

however, many adjustments have been made and more may need to be made in the

future. Each of us has to do what works for us. I thank God I can get up and

go to work and still manage through the pain. Some days, I just have to stay in

bed or in my easy chair. There are many folks who are doing good to put on a

pot of coffee, do one load of laundry or pull five weeds from the flower bed.

If that's what they can accomplish that day, then it's a victory, in my book.

The point is, I kind of feel like some one has judged my take on this thing and

said, excuse me, but that's not the way I

live! Part of me says, well great for you, but what about the rest of us????

in Texas

betnden@... wrote:

The replies I've read so far are a surprise to me in a way. It seems

that

the ones that did reply are the ones that have lots of pain, not ones that

have little to no pain. Apparently these folks are the exception, not the

rule.

When I was researching RA after I first was diagnosed, the only things I

could find were statistics and articles about it happening almost

exclusively to women, and then only in the wrists and ankles with some in

the knees, but not bad enough to keep them from working. I don't know where

the info was coming from, but it was obviously tainted, but was used to

decide my future for me. I just didn't want to continue to work, so they

thought.

So far, there's only one person that reports no pain, the one that gave me

the idea. All the other posts are from the " typical " RA patient. We hurt a

lot but still keep going to at least some extent. Women are made to handle

pain a lot better than us men, but I'm seeing that may not be as true as I

had believed. I think the result is that " all of us need a long, long hug " !

That makes it better, doesn't it, no matter how bad we hurt?

Pat, the pain chart lists pain from 1 to 10, no pain to too much pain. My

normal day starts at about 6-7 and goes up depending on what I do that day,

and I'm on Morphine for pain. Sometimes it doesn't seem to help. You might

share your 'mix' of herbal meds, it may help one of us. You are truly

blessed if it's helping you.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: I have to disagree galaxiexl68

Offline

Send Email

Invite to 360°

I've always wondered about the ones that report no pain when

dealing with

RA. Of the ones I know personally, all have moderate to severe pain

constantly. So, a question for the group. How many, or better yet,

what

percentage of us have no pain, moderate pain, or severe pain? I would

think

that those of us with aggressive RA would have more pain than the

others. I

know mine brings tears to my eyes.

*******************************************************************

Greetings

I don't remember a day I did'nt have pain, I have dealt with pain in

some parts of my body everyday for most of my 50 years.

I know I have osteo arthritis in my hip,and low back, RA possibly in

fingers , feet, neck and where ever it wants to spring up during a

flare up, and God forbid all my aches and pain decide to do so at the

same time, that is when I feel like shooting myself...........if 1 is

extreme pain and 10 is slight pain I would say I am in the 4 to 8

range daily. Most of the time my pain meds do squat for me, I have to

remind myself that I had taken something and that I must wait till

next dose is due, I just use Ibu 800mg 3x day and 2 darvon at night,

and a whole shit pot full of vitamin/herbal stuff I try, but that

don't seem to take the edge off and so I just suffer, I have been

trying a new herbal/vit mix for pain this week and I must say I am

quite surprised at the results. I so far havent had a pain pill in 3

days even with my swollen knee, that is a new problem that I must now

deal with, although we have a major cold front coming in and I have

the tell tale signs that my joints could be in pain ..but they are

just mild so far , I am beginning to be hopeful. My pain level now

is 2 or 3 and so the edge has been taken off for now and hopefully

this will be a permanent thing,if so I am a happy gal.

for what it worth

Pat in the Ozarks

[Guest guest]

Thanks, Sue. Yes, it IS very important for others to know that some folks out

there have found something that works for them. Guess I'm still in the trying

it out phase. I always hope that the easier (and cheaper) meds will work, but

I'm thinking that when I go see the rheumy again at the end of the month, she's

going to want to try something stronger. I'm just on Plaquenil and MTX right

now and it's become obvious to me that I'm going to need more than that. In

the end, if it works (with minimal side effects) I'll count my blessings no

matter what I have to take if it will slow down the progression or even put me

in remission. And I am very glad to know that Enbrel is working for you!

in Texas

Sue <marysue@...> wrote:

Am I the only one then? And I don't mean to say that I have no pain,

just very little.

And I don't have a high threshold for pain, either. I think I've read

that people who have migraines (I do) have a lower than normal

threshold for pain.

I remember when I was having unbearable pain, in my hands, shoulders,

and knees. I couldn't open a jar or bottle; I couldn't squeeze out a

mop, dish rag, or wash cloth. I couldn't raise my arms over my head or

put them behind my back without great pain. I couldn't even cut my own

meat.

And then finally my rheumy found the right regimen for me. I remember

when I went back to him six months after I started on Enbrel, and he

joked, " I've cured her. "

Probably most people who have found a good regimen just get on with

their lives and don't see a need to stay in a support group. But I stay

on because this is such a good group, I like the people in it, and I

can always learn more about our diseases.

I don't know how long Enbrel will keep working so well for me, but I'll

just enjoy it while it lasts. And when I count my blessings every day,

this is near the top of my list.

I wish for all of you in pain some hope and some relief.

Sue

On Friday, January 12, 2007, at 09:06 PM, betnden@... wrote:

>

> So far, there's only one person that reports no pain, the one that

> gave me

> the idea. All the other posts are from the " typical " RA patient.

[Guest guest]

The point is, I kind of feel like some one has judged my take on this

thing and said, excuse me, but that's not the way I

> live! Part of me says, well great for you, but what about the rest

of us????

>

> in Texas

Hi ,

I just wanted to point out that your experience was not the same as my

experience. The words you chose in the earlier post indicated that we

are all living in torment because we have RA. That simply is not true

for me. No judgement; just an expression of diversity.

Sierra

[Guest guest]

>

> The replies I've read so far are a surprise to me in a way. It seems

that

> the ones that did reply are the ones that have lots of pain, not ones

that

> have little to no pain.

I think it's because people who are doing well have no need for an

Internet group like this.

Sierra

[Guest guest]

Sue-

I think (and I could be wrong) that you might not be experiencing any pain

because your disease is being controlled by your medication...which is the goal

for all of us.

But finding the right combination of drugs so so tricky. I think from the vast

majority of post that I've reed..so many people aren't treated well

-comprehensively. And too few doctors adequately treat pain. [Which is stupid in

my opinion because if you are in chronic pain feeling better is much more

challenging and you're prone to more illnesses/problems]

And, because RA is a disease of flares and remissions that sometimes what

looks like a good treatment plan is just a remission..and once you have a flare

- how you view the success or failure of your treatment plan will change.

Also, from my experience so many people with RA have other disorders that also

cause pain that its really hard to compare experiences. I used to compare myself

to other people but since I've joined this listserve and participated in the

online self study/support program called rahelp.org I realize just how

complicated and unique our individual journeys are.

I tell my family and friends that RA [like many auto immune diseases] is like

AIDS but our bodies just do the reverse of what it would do with AIDS and, that

helps them 'get it.' Most folks know that AIDS is a chronic disease that

requires a lot of medical treatments. Everyone knows that AIDS greatly affects

your quality of live. They also know that if you have AIDS you often have a

variety of other diseases. They know that people take a lot of medications in

order to live with AIDS. And they know that just because you look well with AIDS

doesn't mean you're feeling well - or that you are well. When I put things in

this context they take things very seriously.

I say all this to say...RA and other autoimmune diseases are extremely

complicated and I don't think that there is any 'right answer' or 'right

treatment' or 'right experiences.' Our doctors, biology, life styles, insurance,

income, job, stress levels, and other diseases are just a few of the factors

that affect us. And, all of us are having our own unique journeys. Our challenge

is to find the best quality of life given our own unique circumstances. We do

this with support.

Just my ramblely 2 cents.

in IL

[Guest guest]

Just a comment I want to make about pain " threseholds " . No one but you

knows how intense or mild your pain feels---and you cannot compare your " 10 "

or " severe " to anyone elses. I have begun to find the rather recent " scale

of 1-10 " annoying. Dr.'s claim this gives a more universal scale to pain

reporting, but really it is still the same as saying mild, moderate, severe,

etc. Saying I have a low pain thresehold is very strange to me---compared to

what? Maybe your horrible, 10 pain would be that to anyone. While working as

a Physical Therapist I always had patients saying things like " I have a Very

High pain thresehold; so this must be Very Bad. " I always interpreted a

patients pain as a bad thing and something to do everything in my power to

lessen---whether it was labeled as 5 or 7 or 10.

Anyway, my pain varies greatly from day to day. From mild aches and

stiffness to throbbing joints. I am currently waiting to see if Humira works

for me---so far nothing. It has now been 9 weeks--with 3 of those injecting once

a week; so the prospects are looking dim. Louise

__________________________________________________

[Guest guest]

Hi All....

I just wanted to put my 2 cents on the pain issue. In my case....I usually

have knee and hip pain when I am up almost any time. I also get Enbrel shots,

and it has helped me so much I can't begin to say how much it has helped.

Also...my work has helped me a lot for some reason, as I don't focus so much on

myself all day long. I am busy helping these children, and it seems to have a

good effect on me. I am now mainly getting relief from just 2 Aleve a day now

and not using my Rx pain meds so much. Mainly I just use them to help me sleep

at night, as that's when my pain is the worst.

So yes...I do have pain during the day...I know it's there, but I don't focus

my attention on it. I guess it's the old football player in me. I learned to

play through pain while playing, and I guess I am better at it than most. I just

focus on helping the kids. I know there are lots of folks on this list who are

in a great deal of pain....I just am one of the lucky ones...and I know it.

Well...The Saints are coming on soon, and I made a 5 gallon pot of Chicken and

Sausage Gumbo, and a big bowl of potato salad for my wife and I and a few

friends from Louisiana. So I gotta go stir my gumbo, and put on the rice!!!

Larry Holmack

KarLa Bichon Frise

Houston Texas Bichondaddy1057@...

---------------------------------

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

[Guest guest]

Exactly.

On Saturday, January 13, 2007, at 05:02 PM, C Simms wrote:

> Sue-

>

> I think (and I could be wrong) that you might not be experiencing

> any pain because your disease is being controlled by your

> medication...which is the goal for all of us.

>

[Guest guest]

Great comments, I totally agree.

Patti

" Taking it one day at a time! "

louise moore <louwheres@...> wrote:

Just a comment I want to make about pain " threseholds " . No one but

you knows how intense or mild your pain feels---and you cannot compare your " 10 "

or " severe " to anyone elses. I have begun to find the rather recent " scale of

1-10 " annoying. Dr.'s claim this gives a more universal scale to pain reporting,

but really it is still the same as saying mild, moderate, severe, etc. Saying I

have a low pain thresehold is very strange to me---compared to what? Maybe your

horrible, 10 pain would be that to anyone. While working as a Physical Therapist

I always had patients saying things like " I have a Very High pain thresehold; so

this must be Very Bad. " I always interpreted a patients pain as a bad thing and

something to do everything in my power to lessen---whether it was labeled as 5

or 7 or 10.

Anyway, my pain varies greatly from day to day. From mild aches and stiffness to

throbbing joints. I am currently waiting to see if Humira works for me---so far

nothing. It has now been 9 weeks--with 3 of those injecting once a week; so the

prospects are looking dim. Louise

__________________________________________________

[Guest guest]

Sierra:

Really, the only point I was trying to make is that I felt that the person who

decided to leave might have been a little less sensitive. She said she was

leaving the group because she thought Dennis was rude. His remarks didn't seem

rude to me and even if they were, my point was, under the circumstances that

most of us live with, perhaps she should have been a little more understanding.

The thing was, it just all seemed to get blown out of proportion.

I AM glad that you expressed that you are doing so well. Like I said before,

it gives me hope. I do have a question for you, though. What does the dr. tell

you about your future prognosis? If you are relatively symptom free now, does

your dr. think it might remain that way?

I have only been dealing with all of this for about 18 mos. now and so my

knowledge of long term prognosis comes from the books I've read; hence, my take

on it from my earlier e-mail. The posts I've read from folks in this group that

have had RA for several years or more don't sound like they are doing too good.

But, some have pointed out that those who are doing well don't usually join

groups like this, so perhaps we are only hearing one side of the story.

in Texas

snowdrift52003 <snowdrift52003@...> wrote:

aThe point is, I kind of feel like some one has judged my take on this

thing and said, excuse me, but that's not the way I

> live! Part of me says, well great for you, but what about the rest

of us????

>

> in Texas

Hi ,

I just wanted to point out that your experience was not the same as my

experience. The words you chose in the earlier post indicated that we

are all living in torment because we have RA. That simply is not true

for me. No judgement; just an expression of diversity.

Sierra

[Guest guest]

Well said, .

in Texas

C Simms <kcrawfords@...> wrote:

Sue-

I think (and I could be wrong) that you might not be experiencing any pain

because your disease is being controlled by your medication...which is the goal

for all of us.

But finding the right combination of drugs so so tricky. I think from the vast

majority of post that I've reed..so many people aren't treated well

-comprehensively. And too few doctors adequately treat pain. [Which is stupid in

my opinion because if you are in chronic pain feeling better is much more

challenging and you're prone to more illnesses/problems]

And, because RA is a disease of flares and remissions that sometimes what looks

like a good treatment plan is just a remission..and once you have a flare - how

you view the success or failure of your treatment plan will change.

Also, from my experience so many people with RA have other disorders that also

cause pain that its really hard to compare experiences. I used to compare myself

to other people but since I've joined this listserve and participated in the

online self study/support program called rahelp.org I realize just how

complicated and unique our individual journeys are.

I tell my family and friends that RA [like many auto immune diseases] is like

AIDS but our bodies just do the reverse of what it would do with AIDS and, that

helps them 'get it.' Most folks know that AIDS is a chronic disease that

requires a lot of medical treatments. Everyone knows that AIDS greatly affects

your quality of live. They also know that if you have AIDS you often have a

variety of other diseases. They know that people take a lot of medications in

order to live with AIDS. And they know that just because you look well with AIDS

doesn't mean you're feeling well - or that you are well. When I put things in

this context they take things very seriously.

I say all this to say...RA and other autoimmune diseases are extremely

complicated and I don't think that there is any 'right answer' or 'right

treatment' or 'right experiences.' Our doctors, biology, life styles, insurance,

income, job, stress levels, and other diseases are just a few of the factors

that affect us. And, all of us are having our own unique journeys. Our challenge

is to find the best quality of life given our own unique circumstances. We do

this with support.

Just my ramblely 2 cents.

in IL

[Guest guest]

Sue:

I was concerned about side effects before I started MTX, and I DID have bad

side effects with the pills, but switching to injections made all the difference

for me. MTX seemed to help, along with Plaquenil, but I am still a long way

from being symptom free. I suspect that when I tell my rheumy later this month

what my symptoms have been like, she'll want to start pulling out the " big guns "

like Enbrel, Remicade or Humira to try to slow down the progression of the joint

damage I already have. As concerned as I was about MTX, I am even more

concerned about the newer drugs, although I have read through group members that

many are having success. Everyone is different, so I guess I'll have to keep

trying to find the right combo for me. After all, it's better than the

alternative. I just pray that I don't end up trying something that makes me

very sick because I have a full time job and 4 kids. I can't afford to get

sick. (Who can!?!)

in Texas

Sue <marysue@...> wrote:

,

I am the other one who said I am doing well, and this is my seventh

year with RA. It took a while to get relief, and I am just hoping that

Enbrel will continue to work as well for me in the future as it does

now. If it stops working, my rheumy and I will try something else. I

hope that it does give you hope that you can also get relief. That's

what we all should be striving for, in my opinion.

But that's a good question for me to ask my rheumy, about my prognosis

for the future. He keeps his thoughts entirely to himself. He's quite

unlike my original one, who relocated to Atlanta. He doesn't say I'm

doing well, or anything, but he does give me a very thorough

examination. Last week he asked how many times I'd been sick since I

saw him last, and asked if I had had the flu shot. So I do think that

he is taking good care of me. I just wish he'd show a little more

personality!

Sue

On Monday, January 15, 2007, at 09:50 PM, Pou wrote:

>

> I AM glad that you expressed that you are doing so well. Like I

> said before, it gives me hope. I do have a question for you, though.

> What does the dr. tell you about your future prognosis? If you are

> relatively symptom free now, does your dr. think it might remain that

> way?

[Guest guest]

,

I'm facing that same dilemma. My doctor want me to consider Remicade. My

side effect on MTX have leveled out. Last week I took an Advil Thursday

night(when I take MTX) and Friday night, no head ache when I woke up. I

haven't had nausea after the last two doses. I'm on MTX and sulfasalzine

(only 7 weeks). I see my doctor in 4 1/2 weeks. I'm leaning toward the

Remicade.

I've been doing research and praying.

Kate

At 08:37 AM 1/16/2007, you wrote:

>Sue:

>

> I was concerned about side effects before I started MTX, and I DID have

> bad side effects with the pills, but switching to injections made all the

> difference for me. MTX seemed to help, along with Plaquenil, but I am

> still a long way from being symptom free. I suspect that when I tell my

> rheumy later this month what my symptoms have been like, she'll want to

> start pulling out the " big guns " like Enbrel, Remicade or Humira to try

> to slow down the progression of the joint damage I already have. As

> concerned as I was about MTX, I am even more concerned about the newer

> drugs, although I have read through group members that many are having

> success. Everyone is different, so I guess I'll have to keep trying to

> find the right combo for me. After all, it's better than the

> alternative. I just pray that I don't end up trying something that makes

> me very sick because I have a full time job and 4 kids. I can't afford

> to get sick. (Who can!?!)

>

> in Texas

>

> Sue <marysue@...> wrote:

> ,

>

>I am the other one who said I am doing well, and this is my seventh

>year with RA. It took a while to get relief, and I am just hoping that

>Enbrel will continue to work as well for me in the future as it does

>now. If it stops working, my rheumy and I will try something else. I

>hope that it does give you hope that you can also get relief. That's

>what we all should be striving for, in my opinion.

>

>But that's a good question for me to ask my rheumy, about my prognosis

>for the future. He keeps his thoughts entirely to himself. He's quite

>unlike my original one, who relocated to Atlanta. He doesn't say I'm

>doing well, or anything, but he does give me a very thorough

>examination. Last week he asked how many times I'd been sick since I

>saw him last, and asked if I had had the flu shot. So I do think that

>he is taking good care of me. I just wish he'd show a little more

>personality!

>

>Sue

>

>On Monday, January 15, 2007, at 09:50 PM, Pou wrote:

> >

> > I AM glad that you expressed that you are doing so well. Like I

> > said before, it gives me hope. I do have a question for you, though.

> > What does the dr. tell you about your future prognosis? If you are

> > relatively symptom free now, does your dr. think it might remain that

> > way?

>

>

>

>

>

>

>

[Guest guest]

Actually, , I am not having any adverse side effects from

Enbrel. MTX caused my white blood cell count to get too low, and Arava

continued the decline, but with Enbrel the white blood cells have been

recovering very, very slowly. Even with a low normal WBC count, I don't

get infections often. Part of the reason for that may be that I am

retired and not often around sick people too often. You don't know

until you try a medication what benefits and adverse side effects

you'll get, because we're all so different. And your rheumy will

monitor you closely so that if you do get unacceptable side effects, he

can switch you to something else.

Sue

On Tuesday, January 16, 2007, at 09:37 AM, Pou wrote:

> Sue:

>

> I was concerned about side effects before I started MTX, and I DID

> have bad side effects with the pills, but switching to injections made

> all the difference for me. MTX seemed to help, along with Plaquenil,

> but I am still a long way from being symptom free. I suspect that

> when I tell my rheumy later this month what my symptoms have been

> like, she'll want to start pulling out the " big guns " like Enbrel,

> Remicade or Humira to try to slow down the progression of the joint

> damage I already have. As concerned as I was about MTX, I am even

> more concerned about the newer drugs, although I have read through

> group members that many are having success. Everyone is different, so

> I guess I'll have to keep trying to find the right combo for me.

> After all, it's better than the alternative. I just pray that I don't

> end up trying something that makes me very sick because I have a full

> time job and 4 kids. I can't afford to get sick. (Who can!?!)

>

[Guest guest]

Kate,

Let me know how it turns out for you. My appt. is on the 31st.

in Texas

Kate Guynn <kguynn@...> wrote:

,

I'm facing that same dilemma. My doctor want me to consider Remicade. My

side effect on MTX have leveled out. Last week I took an Advil Thursday

night(when I take MTX) and Friday night, no head ache when I woke up. I

haven't had nausea after the last two doses. I'm on MTX and sulfasalzine

(only 7 weeks). I see my doctor in 4 1/2 weeks. I'm leaning toward the

Remicade.

I've been doing research and praying.

Kate

At 08:37 AM 1/16/2007, you wrote:

>Sue:

>

> I was concerned about side effects before I started MTX, and I DID have

> bad side effects with the pills, but switching to injections made all the

> difference for me. MTX seemed to help, along with Plaquenil, but I am

> still a long way from being symptom free. I suspect that when I tell my

> rheumy later this month what my symptoms have been like, she'll want to

> start pulling out the " big guns " like Enbrel, Remicade or Humira to try

> to slow down the progression of the joint damage I already have. As

> concerned as I was about MTX, I am even more concerned about the newer

> drugs, although I have read through group members that many are having

> success. Everyone is different, so I guess I'll have to keep trying to

> find the right combo for me. After all, it's better than the

> alternative. I just pray that I don't end up trying something that makes

> me very sick because I have a full time job and 4 kids. I can't afford

> to get sick. (Who can!?!)

>

> in Texas

>

> Sue <marysue@...> wrote:

> ,

>

>I am the other one who said I am doing well, and this is my seventh

>year with RA. It took a while to get relief, and I am just hoping that

>Enbrel will continue to work as well for me in the future as it does

>now. If it stops working, my rheumy and I will try something else. I

>hope that it does give you hope that you can also get relief. That's

>what we all should be striving for, in my opinion.

>

>But that's a good question for me to ask my rheumy, about my prognosis

>for the future. He keeps his thoughts entirely to himself. He's quite

>unlike my original one, who relocated to Atlanta. He doesn't say I'm

>doing well, or anything, but he does give me a very thorough

>examination. Last week he asked how many times I'd been sick since I

>saw him last, and asked if I had had the flu shot. So I do think that

>he is taking good care of me. I just wish he'd show a little more

>personality!

>

>Sue

>

>On Monday, January 15, 2007, at 09:50 PM, Pou wrote:

> >

> > I AM glad that you expressed that you are doing so well. Like I

> > said before, it gives me hope. I do have a question for you, though.

> > What does the dr. tell you about your future prognosis? If you are

> > relatively symptom free now, does your dr. think it might remain that

> > way?

>

>

>

>

>

>

>

[Guest guest]

Hi ,

After reading the stories of people who have been helped by

minocycline, I am very hopeful. Also, on the website " remedyfind "

where consumers can rate the different meds they've tried for a

particular condition, antibiotic therapy came out on top. I still

have aches and pains, and had a flare at Christmas, but overall I am

doing well--working 32 hours a week and enjoying life much more on

this med than on the others I tried. I see my rheumy in March; I

doubt she will give me any kind of prognosis. I got a second opinion

from another rheumy in the fall and he expressed much optimism for me-

- " I'm seeing very little inflammation--if I hadn't read your chart I

wouldn't have thought there was anything wrong with you. " I'm working

hard at recovery--swimming, diet, stress management, meditation,

acupuncture, " news fasts " (avoiding news for a period of time because

of its negativity, massage, etc. I'm aiming for the highest level of

wellness I can achieve.

Sierra

> aThe point is, I kind of feel like some one has judged my

take on this

> thing and said, excuse me, but that's not the way I

> > live! Part of me says, well great for you, but what about the

rest

> of us????

> >

> > in Texas

>

> Hi ,

> I just wanted to point out that your experience was not the same as

my

> experience. The words you chose in the earlier post indicated that

we

> are all living in torment because we have RA. That simply is not

true

> for me. No judgement; just an expression of diversity.

>

> Sierra

>

>

>

>

>

>

>

[Guest guest]

, I thought having a pool to exercise in would be good for both of

us, so we bought an above ground pool. That was the easy part. The first

season, we got all the chemicals and kept the pool in good condition the

rest of the year. Since then, especially last year when it was so hot, I had

a hard time trying to keep the algae under control. Also, the price of

electricity went up due to the " fuel shortage " , and made it unaffordable. We

had to shut the pool down and not even use it. I guess it's just an

expensive nature habitat now. Getting something can be easy, but maintaining

it can be impossible, even if it's a dog or cat, etc...

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Re: pain or no pain

> Wow! You are doing quite a bit. I wanted to start swimming because I

> love to swim and it's " no impact " aerobics, but can't afford a pool and

> the public ones in our area are outdoor pools just for the summer months.

> I was supposed to start walking on my lunch hour every day with a

> co-worker, but the arctic blast that has hit everyone has delayed that.

>

> in Texas

[Guest guest]

Or even a husband, LOL. Sue

On Wednesday, January 17, 2007, at 10:42 AM, betnden@...

wrote:

> Getting something can be easy, but maintaining

> it can be impossible, even if it's a dog or cat, etc...

[Guest guest]

Above ground pools don't have to be expensive. We bought a used pool

for $100, (it came with a brand new liner, too) and paid another $300

to have the ground professionally prepared and the pool moved to our

property. (of course, then my husband wanted a deck built too, but

that's a completely different story, and was not a direct pool

expense<g>)

We found out from the pool-setup company that LOTS of people buy

houses with above ground pools and don't want them, so they are often

moved. They said that more than half their buisness was moving pools

rather than putting up new ones. We've have the pool for 5 years

now, and it looks as good as they day we " bought " it.

The maintenance is a bit of a pain... we have a lot of trees on our

property, and even though none are directly over the pool, a lot get

blown in. Fortunately, I have two sons who get pressed into pool

vacuuming duty.<g> I don't really have a problem doing the chemicals

myself. I just make sure the basket is kept full of tablets, and

shock it one every week or two.

That said, the reason we went for an above ground pool is that I

doubt we'll want to keep up with it once the kids leave home. Then

we'll just get rid of it. I'd rather stay in the house with my

(newly installed this year) air conditioning. Here in N.E., our pool

season is pretty short anyway. It's not warm enough for me to be

willing to get into it until at least mid-June, and the seasn is

pretty much over by the beginning of Sept.

Now, my husband's sister has an INDOOR pool, which might be very

cool, but we sure don't have the money for something like that!<g>

(and we're not on good enough terms with them to get invited to use

theirs very often ;-)

>

> , I thought having a pool to exercise in would be good for

both of

> us, so we bought an above ground pool. That was the easy part. The

first

> season, we got all the chemicals and kept the pool in good

condition the

> rest of the year. Since then, especially last year when it was so

hot, I had

> a hard time trying to keep the algae under control. Also, the price

of

> electricity went up due to the " fuel shortage " , and made it

unaffordable. We

> had to shut the pool down and not even use it. I guess it's just an

> expensive nature habitat now. Getting something can be easy, but

maintaining

> it can be impossible, even if it's a dog or cat, etc...

>

> Dennis in Eastexas

> " It's not Rocket Surgery "

>

> Re: [ ] Re: pain or no pain

>

>

> > Wow! You are doing quite a bit. I wanted to start swimming

because I

> > love to swim and it's " no impact " aerobics, but can't afford a

pool and

> > the public ones in our area are outdoor pools just for the summer

months.

> > I was supposed to start walking on my lunch hour every day with a

> > co-worker, but the arctic blast that has hit everyone has delayed

that.

> >

> > in Texas

>

[Guest guest]

I'm with you on that one, Dennis. I looked at above ground and inground pools.

If it's above ground, I would need some kind of small deck or platform because

those little ladders just won't do. Add to that the cost (and time) of

maintenance, etc. and I just could not afford it. Hopefully, the walking will

work wonders for me.

in Texas

betnden@... wrote:

, I thought having a pool to exercise in would be good for

both of

us, so we bought an above ground pool. That was the easy part. The first

season, we got all the chemicals and kept the pool in good condition the

rest of the year. Since then, especially last year when it was so hot, I had

a hard time trying to keep the algae under control. Also, the price of

electricity went up due to the " fuel shortage " , and made it unaffordable. We

had to shut the pool down and not even use it. I guess it's just an

expensive nature habitat now. Getting something can be easy, but maintaining

it can be impossible, even if it's a dog or cat, etc...

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Re: pain or no pain

> Wow! You are doing quite a bit. I wanted to start swimming because I

> love to swim and it's " no impact " aerobics, but can't afford a pool and

> the public ones in our area are outdoor pools just for the summer months.

> I was supposed to start walking on my lunch hour every day with a

> co-worker, but the arctic blast that has hit everyone has delayed that.

>

> in Texas