Re: Some questions please

[Guest guest]

Cheli,

Fatigue and pain are big problems for those with RA. Be sure to

discuss these issues with your rheumatologist. Disease-modifying

antirheumatic drugs (DMARDs) are very important in combating pain and

fatigue.

I'm not sure about allergies and RA.

An autoimmune disease is one in which the body mistakenly attacks its

own tissues.

Not an MD

On Sat, Oct 24, 2009 at 4:35 PM, <hlhsinfo@...> wrote:

> I'm new to the group. I wrote my intro and had some questions in that but no

one answered them.

>

> Right now I'm dealing with being very tired and aching from 11-9 pm at night.

Is this normal and is there anything I can do for this? When I get like this I

can't think straight and I forget things. I'm not normally like this. I also

have seasonal allergies. My allergies seem to be getting worse. When you have RA

is it harder for your body to fight the allergies? When they say this is an

autoimmune disease what does that mean? I'm sorry I don't know much about RA.

>

> Thanks for your help,

> Cheli

[Guest guest]

Hi Cheli:  Welcome to our wonderful group.  The worst thing for me is the

tiredness from my RA.  Nothing much helps.  I do try to rest as much as

possible, and nap if I can.  I have been very tired for the last 4 days, and

today is the worst.  I did a craft fair, and was so tired I couldn't wait to

close up my booth.  Such is this side effect of RA.

I don't know much about allergies and if RA effects them at all.  I do know that

the RA meds. we take, along with RA, weakens our immune systems.  I have had RA

for 6 1/2 years, and been hospitalized with pneumonia 5 times already.  I also

get Bronchits and U.R.I.'s very easily.  Twice in the past few years, my blood

has been very low, and I have had to have blood transfusions each time.

This is a very hard disease to live with.  I just take one day at a time, and do

the things I can do.  It has altered my life, but I am just happy I can still do

some things.  I don't dwell on the things I can't do anymore.

I hope you have many pain free days ahead.  Again, welcome to our group.

 

Hugs,

 

Barbara

From: hlhsinfo@... <hlhsinfo@...>

Subject: [ ] Some questions please

" RA-support " < >

Date: Saturday, October 24, 2009, 5:35 PM

 

I'm new to the group. I wrote my intro and had some questions in that but no one

answered them.

Right now I'm dealing with being very tired and aching from 11-9 pm at night. Is

this normal and is there anything I can do for this? When I get like this I

can't think straight and I forget things. I'm not normally like this. I also

have seasonal allergies. My allergies seem to be getting worse. When you have RA

is it harder for your body to fight the allergies? When they say this is an

autoimmune disease what does that mean? I'm sorry I don't know much about RA.

Thanks for your help,

Cheli

__________________________________________________

[Guest guest]

Cheli,

Welcome to the group. This is a very supportive group of people, and

our wonderful moderator, , keeps us updated by posting articles

relevant to questions we have.

I also have seasonal allergies. I once asked my rheumatologist about

their connection to RA. Since we're more susceptible to infections, I

wanted to know if RA also made us more susceptible to allergies. He

said, " I don't think any studies have been done on that. "

I wish someone would do such a study. It seems to me that our out of

whack immune system could allow us to have more allergies.

Sue

On Oct 24, 2009, at 5:35 PM, hlhsinfo@... wrote:

> I'm new to the group. I wrote my intro and had some questions in

> that but no one answered them.

>

> Right now I'm dealing with being very tired and aching from 11-9 pm

> at night. Is this normal and is there anything I can do for this?

> When I get like this I can't think straight and I forget things. I'm

> not normally like this. I also have seasonal allergies. My allergies

> seem to be getting worse. When you have RA is it harder for your

> body to fight the allergies? When they say this is an autoimmune

> disease what does that mean? I'm sorry I don't know much about RA.

>

> Thanks for your help,

> Cheli

>

[Guest guest]

If we are more susceptible to infection then what does that mean? I'm still

trying to figure out that part. So if I get a cold will that mean I will get it

worse than the rest of the family or say the flu? Is there things I need to

watch out for? I wish they had RA for dummies cause I will be first in line for

it. I don't know anyone that has RA so I can't ask. My doc is nice but he

doesn't have hours to explain everything to me. I'm only 34 and no one wants to

believe me when I say I'm tired or ache. They all call me the old lady. I try to

tell them it happens to people that are young. My husband hasn't taken the news

to well. He thinks most of it is in my head. I think he is getting most of his

thoughts from his mother.

Thanks for responding,

Cheli

Re: [ ] Some questions please

Cheli,

Welcome to the group. This is a very supportive group of people, and

our wonderful moderator, , keeps us updated by posting articles

relevant to questions we have.

I also have seasonal allergies. I once asked my rheumatologist about

their connection to RA. Since we're more susceptible to infections, I

wanted to know if RA also made us more susceptible to allergies. He

said, " I don't think any studies have been done on that. "

I wish someone would do such a study. It seems to me that our out of

whack immune system could allow us to have more allergies.

Sue

[Guest guest]

I asked him and he said it was the RA. I have only been there 2 times now. I go

back in a month. I just started a med but have to wait 3 months before I might

see something. Thank you for all the articles.

Cheli

Re: [ ] Some questions please

Cheli,

Fatigue and pain are big problems for those with RA. Be sure to

discuss these issues with your rheumatologist. Disease-modifying

antirheumatic drugs (DMARDs) are very important in combating pain and

fatigue.

I'm not sure about allergies and RA.

An autoimmune disease is one in which the body mistakenly attacks its

own tissues.

Not an MD

[Guest guest]

Hi Cheli and welcome. We are more prone to infections if we take drugs that

suppress the immune system such as DMARDs and the biologics. It's good to stay

on top of infections and keep in close touch with your

Primary doc, especially during cold and flu season. I've

Taken Enbrel since 06 and - knock wood- have been fine. Kate f

Sent from my iPhone

On Oct 24, 2009, at 8:03 PM, hlhsinfo@... wrote:

If we are more susceptible to infection then what does that mean? I'm still

trying to figure out that part. So if I get a cold will that mean I will get it

worse than the rest of the family or say the flu? Is there things I need to

watch out for? I wish they had RA for dummies cause I will be first in line for

it. I don't know anyone that has RA so I can't ask. My doc is nice but he

doesn't have hours to explain everything to me. I'm only 34 and no one wants to

believe me when I say I'm tired or ache. They all call me the old lady. I try to

tell them it happens to people that are young. My husband hasn't taken the news

to well. He thinks most of it is in my head. I think he is getting most of his

thoughts from his mother.

Thanks for responding,

Cheli

Re: [ ] Some questions please

Cheli,

Welcome to the group. This is a very supportive group of people, and

our wonderful moderator, , keeps us updated by posting articles

relevant to questions we have.

I also have seasonal allergies. I once asked my rheumatologist about

their connection to RA. Since we're more susceptible to infections, I

wanted to know if RA also made us more susceptible to allergies. He

said, " I don't think any studies have been done on that. "

I wish someone would do such a study. It seems to me that our out of

whack immune system could allow us to have more allergies.

Sue

[Guest guest]

Thank you for responding. I did read that you did a craft fair. Was it you or

someone else that lived or visited Chicago? The reason I asked is because I live

in Chicago. I'm glad you were able to finish and you didn't have to go home. I

never could take naps during the day but now it is like I need them. I have a 9

and 2 year old. It is so hard on me to help them at times because I'm just so

tired. I'm sorry you have gotten so sick. I hope you have less of them in the

future.

Thanks for responding,

Cheli

Re: [ ] Some questions please

Hi Cheli:  Welcome to our wonderful group.  The worst thing for me is the

tiredness from my RA.  Nothing much helps.  I do try to rest as much as

possible, and nap if I can.  I have been very tired for the last 4 days, and

today is the worst.  I did a craft fair, and was so tired I couldn't wait to

close up my booth.  Such is this side effect of RA.

I don't know much about allergies and if RA effects them at all.  I do know that

the RA meds. we take, along with RA, weakens our immune systems.  I have had RA

for 6 1/2 years, and been hospitalized with pneumonia 5 times already.  I also

get Bronchits and U.R.I.'s very easily.  Twice in the past few years, my blood

has been very low, and I have had to have blood transfusions each time.

This is a very hard disease to live with.  I just take one day at a time, and do

the things I can do.  It has altered my life, but I am just happy I can still do

some things.  I don't dwell on the things I can't do anymore.

I hope you have many pain free days ahead.  Again, welcome to our group.

 

Hugs,

 

Barbara

[Guest guest]

Cheli,

When we have RA or any other autoimmune disease, our immune system

attacks our own body. In RA, it's the joints. The DMARDs that we take

suppress some aspect of the immune system to hopefully help some of

our symptoms. This means that we may be more susceptible to infections

than other people.

The DMARD that I'm on is one of the biologic drugs, Enbrel, that is

given by injection. I've been on it for over six years, and it does a

wonderful job of easing my pain and inflammation. I am lucky in that I

do not get infections frequently. We just have to be aware and try to

take good care of ourselves. I think that eating properly and getting

plenty of rest and sleep help.

Here is a good explanation of RA:

http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020

Sue

On Oct 24, 2009, at 9:03 PM, hlhsinfo@... wrote:

> If we are more susceptible to infection then what does that mean?

> I'm still trying to figure out that part. So if I get a cold will

> that mean I will get it worse than the rest of the family or say the

> flu? Is there things I need to watch out for? I wish they had RA for

> dummies cause I will be first in line for it. I don't know anyone

> that has RA so I can't ask. My doc is nice but he doesn't have hours

> to explain everything to me. I'm only 34 and no one wants to believe

> me when I say I'm tired or ache. They all call me the old lady. I

> try to tell them it happens to people that are young. My husband

> hasn't taken the news to well. He thinks most of it is in my head. I

> think he is getting most of his thoughts from his mother.

>

[Guest guest]

sue,

I'm 34 as well and 3 years ago I was in your position. My now exhusband did not

understand me or understand RA and did not want to try to understand it. It got

to the point where he would call me lazy and that I was lying about it. He even

went as far a few times of pushing me down stairs trying to get me to move

faster at that point I could not. I was diagnosed in May 06 and left him in

october 06. Best thing I could have ever done for me and my 2 children. As for

the immune system, try not to be around others who are sick, I unfortunately

catch everything and work in a field that is not immune system friendly. I'm a

job coach and work with individuals who have developmental disabilities. I just

make sure that I take multi vitamins everyday and keep on my med schedule I'm on

orencia. It seems to help raise up the immune system a bit according to my

Rheumy.

RA since 2006

Re: [ ] Some questions please

Cheli,

When we have RA or any other autoimmune disease, our immune system

attacks our own body. In RA, it's the joints. The DMARDs that we take

suppress some aspect of the immune system to hopefully help some of

our symptoms. This means that we may be more susceptible to infections

than other people.

The DMARD that I'm on is one of the biologic drugs, Enbrel, that is

given by injection. I've been on it for over six years, and it does a

wonderful job of easing my pain and inflammation. I am lucky in that I

do not get infections frequently. We just have to be aware and try to

take good care of ourselves. I think that eating properly and getting

plenty of rest and sleep help.

Here is a good explanation of RA:

http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020

Sue

On Oct 24, 2009, at 9:03 PM, hlhsinfo@... wrote:

> If we are more susceptible to infection then what does that mean?

> I'm still trying to figure out that part. So if I get a cold will

> that mean I will get it worse than the rest of the family or say the

> flu? Is there things I need to watch out for? I wish they had RA for

> dummies cause I will be first in line for it. I don't know anyone

> that has RA so I can't ask. My doc is nice but he doesn't have hours

> to explain everything to me. I'm only 34 and no one wants to believe

> me when I say I'm tired or ache. They all call me the old lady. I

> try to tell them it happens to people that are young. My husband

> hasn't taken the news to well. He thinks most of it is in my head. I

> think he is getting most of his thoughts from his mother.

>

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

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06:43:00

[Guest guest]

Autoimmune means the body's defense system fights against itself making

you harder to fight off infections or illness. I have had RA since being

diagnosed with it in 1980. Have had many infections and illness due to my body

not being able to fight off infection. I had to have surgery in 2001 to cut

away dying tissue that had gotten infected from a boil on my...you know

where parts. I was critical and after that episode has taken better care of

trying to stay away from folks that are sick with a cold or flu, coughing,

sneezing or a child with a runny nose if I can. It took me a long time to

come to realization that I have this disease and how it affects my body and

health. It is something you have to get used to because there is no cure just

manageability for life.

Irish

[Guest guest]

Hi Cheli:  No, I live in South west Florida.  I am very tired today, so I will

rest, read my Sunday paper, and enjoy T.V. movies.

It must be so hard with the tiredness and 2 children.. They have endless

energy.  I know how busy 2 year olds are.

I went home last month to Mass. to spend a week with my daughter, and 2

grandbabies 2 and 3.  I spent my days with the kids, played with them, crafts,

coloring, painting.  We did lots together, mostly I was sitting with them.  I

laid down each afternoon and my Lexie, who is 3, laid on the bed with me and we

played shopping at the store with a cash register, etc.  The main thing was we

had fun while I managed to rest.  I do lots with them, but not strenuous.  We

did take several small walks each day.  We had quality time together.

We all have to find what works for us and what doesn't.  Lexie is a big help to

me.  They both bring such joy to my life.

I am sure you will find ways to enjoy your children without being too tired to

do so.  We just have to do things in different ways

Take care of yourself, rest when you can, and have fun with your children.  They

grow so fast.

 

Hugs,

 

Barbara

From: hlhsinfo@... <hlhsinfo@...>

Subject: Re: [ ] Some questions please

" RA-support " < >

Date: Saturday, October 24, 2009, 9:19 PM

Thank you for responding. I did read that you did a craft fair. Was it you or

someone else that lived or visited Chicago? The reason I asked is because I live

in Chicago. I'm glad you were able to finish and you didn't have to go home. I

never could take naps during the day but now it is like I need them. I have a 9

and 2 year old. It is so hard on me to help them at times because I'm just so

tired. I'm sorry you have gotten so sick. I hope you have less of them in the

future.

Thanks for responding,

Cheli

Re: [ ] Some questions please

Hi Cheli:  Welcome to our wonderful group.  The worst thing for me is the

tiredness from my RA.  Nothing much helps.  I do try to rest as much as

possible, and nap if I can.  I have been very tired for the last 4 days, and

today is the worst.  I did a craft fair, and was so tired I couldn't wait to

close up my booth.  Such is this side effect of RA.

I don't know much about allergies and if RA effects them at all.  I do know that

the RA meds. we take, along with RA, weakens our immune systems.  I have had RA

for 6 1/2 years, and been hospitalized with pneumonia 5 times already.  I also

get Bronchits and U.R.I.'s very easily.  Twice in the past few years, my blood

has been very low, and I have had to have blood transfusions each time.

This is a very hard disease to live with.  I just take one day at a time, and do

the things I can do.  It has altered my life, but I am just happy I can still do

some things.  I don't dwell on the things I can't do anymore.

I hope you have many pain free days ahead.  Again, welcome to our group.

 

Hugs,

 

Barbara

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

[Guest guest]

When I was diagnosed and knew what was going on with me I did not accept

it. Being disabled was not going to stop me from doing what I wanted or

needed to do. I got on the meds and started to feel better. The treatments

tired

me out...Remicade...then that stopped working after 8 years. Flare ups

came more often. Started Humira along with prednisone and methotrexate...pain

and symptoms got better. Humira got too expensive and stared on

Rituxin...things got better for a year...then right back to square one with the

more

frequent flare ups and doctor tried another round of Rituxin one year later.

Had my third round of Rituxin and 7 months later have flare ups seem worse

than before even with the methotrexate. My family, especially my siblings

and my father and mother thought that it was all in my mind that I was

hurting. 1982 had an MRI done to see what was going on with my back. Day after

I got up and vision was crossed. I had papaladema (msp) where the brain

acts like it has a tumore, but there is lots of swelling behind the eyes and

pressure causing crossed vision. Went on prednisone for 8 weeks. Eye

specialist said that it was my Rheumatoid causing it and had nothing to do with

the MRI. I had a cataract removed in 1997 and episcleritis flared up to the

point that I could not see. Sight did not come back in my right eye due to

extreme pressure and such a long time on the prednisone and the severity of

the episcleritis. Laser did nothing to help me see. My folks did not

believe that I was sick until I ended up with an infection in 2001 and had to

have surgery. Spent 9 days in the hospital on IV antibiotics. My folks laughed

and talked and made fun of how I walked and cried constantly from pain. I

started trying to act like I was not in pain when around them. Put on fake

smiles and was wretched with pain all the time. I even took pain meds to

kill any pain that I had...vicodin (msp), xanax, lortab. They kept me

functioning also when I started back to work. You have to be in a persons shoes

or

position with RA to truly understand what the pain is like and the other

symptoms we go through. I would not wish this pain or disease on any of my

worst enemies. Most people that I know with RA will not talk or try not to

show how they feel. Especially men.

Irish

[Guest guest]

That's Cheli who is 34. I'm afraid I'm quite a bit older. I reached

the big 7-0 in August.

Sue

On Oct 24, 2009, at 11:30 PM, Massey wrote:

> sue,

> I'm 34 as well and 3 years ago I was in your position. My now

> exhusband did not understand me or understand RA and did not want to

> try to understand it. It got to the point where he would call me

> lazy and that I was lying about it. He even went as far a few times

> of pushing me down stairs trying to get me to move faster at that

> point I could not. I was diagnosed in May 06 and left him in

> october 06. Best thing I could have ever done for me and my 2

> children. As for the immune system, try not to be around others who

> are sick, I unfortunately catch everything and work in a field that

> is not immune system friendly. I'm a job coach and work with

> individuals who have developmental disabilities. I just make sure

> that I take multi vitamins everyday and keep on my med schedule I'm

> on orencia. It seems to help raise up the immune system a bit

> according to my Rheumy.

>

>

> RA since 2006

[Guest guest]

I do not work now. I worked 15 years at a wire production plant where

I stood all day lifting anywhere from 2 lb. rolls of wire aluminum and

fiberglass to 108 feet long weighing 90 lbs. or more depending on how much

material was rolled up. The reason I had to resign from my job was due to I

passed out at work due to severe pain and became paralyzed in my right leg

with some numbness in my left from a pinched nerve and an injury that I

sustained while working. After injuring myself at work I did not go home and

rest the 3 days I was suppose to and made the injury worse. Went to the

bathroom and awake in the ER several hours later. I have had 3 back surgeries

due

to the injury and the RA was already there, but got worse after the

injury. I then after getting better without a clearance from my doctors went

back

to work for 7 months and got to where I could not sit down or stand

without having to have help getting up or sitting down. I ended up back in the

hospital and was told that I was to ill to do the work I once did and over

the years the RA and other health problems have kept me almost home bound

with assistance from a cane and other devices. Yes I have been through more

things with this RA than people know. I started having symptoms in 1980 after

I got hurt. I was 20 when I was told I had simple arthritis by my PCP when

I had problems with my hands. I was 29 years old when I was officially

diagnosed with RA. Did not get treated for RA until 1993 due to insurance

problems and financially not able to handle the meds. I am 49 now.

Irish

[Guest guest]

Happy belated birthday, Sue!

Not an MD

On Sun, Oct 25, 2009 at 11:49 AM, marysue <marysue@...> wrote:

> That's Cheli who is 34. I'm afraid I'm quite a bit older. I reached

> the big 7-0 in August.

>

> Sue

[Guest guest]

Thanks, . Maybe you should have sent a sympathy card, LOL.

Sue

On Oct 25, 2009, at 2:13 PM, wrote:

> Happy belated birthday, Sue!

>

>

> Not an MD

[Guest guest]

Hi Cheli,

I don't have RA, but my husband (age 33) was diagnosed with it earlier this

year. I came to this group trying to understand what he was going through. It

was very confusing to me at first, and very frustrating! Encourage your husband

to read more information. Buy a book on RA and leave it in the bathroom! Take

out all the sports magazines, then he'll have to take a peek at the book

It has been such a grieving process for both my husband and I. Our lives have

changed 180 degrees. All our goals and plans have had to be changed, or at the

very least modified. So at first it was very tempting to think that it wasn't

real.

In order to understand better, I have made it a point to go to every one of my

husband's Rheumy visits. I never truly " hear " what my husband says about his

illness till I hear him discuss it with the Rheumy. My husband leaves the Rheumy

more optimistic, and I'm a little down. I realize how much I take for granted.

A good example of how naive a spouse can be as to the true extent of the RA, is

a post I did here on this board a couple of months ago. I was looking for some

ideas for hobbies for my husband. I figured if he had something to occupy his

brain, he would feel a little better. The responses touched me so much. It was

such a turning point for me as the spouse. I truly admire all the daily things

that people with RA are able to accomplish through the pain and fatigue. When I

read the experiences of complete strangers, I could be compassionate and

empathetic. In the early days of diagnosis, I am sure I didn't give my husband

those same levels of fellow feeling that he deserved. I'm not perfect, but am

trying to meet his needs emotionally now.

Give your husband lots of information and time to digest it. Open communication

is needed now more than ever! If you have had a strained relationship in the

past, seek out a counselor. Chronic disease is as stressful to a relationship as

any other major life stressor, and many times is followed by more challenges

than just the disease alone.

Thank you to everyone for sharing your experiences! It means so much to so many

of us...

Kate

>

> If we are more susceptible to infection then what does that mean? I'm still

trying to figure out that part. So if I get a cold will that mean I will get it

worse than the rest of the family or say the flu? Is there things I need to

watch out for? I wish they had RA for dummies cause I will be first in line for

it. I don't know anyone that has RA so I can't ask. My doc is nice but he

doesn't have hours to explain everything to me. I'm only 34 and no one wants to

believe me when I say I'm tired or ache. They all call me the old lady. I try to

tell them it happens to people that are young. My husband hasn't taken the news

to well. He thinks most of it is in my head. I think he is getting most of his

thoughts from his mother.

>

> Thanks for responding,

> Cheli

>

[Guest guest]

You've been through a lot. What is it that you do at work? How old were you when

you were diagnosed? You story is similar to mine. Hope you're feeling better. I

was flared up yesterday and had to D. J. For a sweet 16 party last night.

Feeling a bit tired today.

Sent on the Sprint® Now Network from my BlackBerry®

Re: [ ] Re: Some questions please

When I was diagnosed and knew what was going on with me I did not accept

it. Being disabled was not going to stop me from doing what I wanted or

needed to do. I got on the meds and started to feel better. The treatments

tired

me out...Remicade...then that stopped working after 8 years. Flare ups

came more often. Started Humira along with prednisone and methotrexate...pain

and symptoms got better. Humira got too expensive and stared on

Rituxin...things got better for a year...then right back to square one with the

more

frequent flare ups and doctor tried another round of Rituxin one year later.

Had my third round of Rituxin and 7 months later have flare ups seem worse

than before even with the methotrexate. My family, especially my siblings

and my father and mother thought that it was all in my mind that I was

hurting. 1982 had an MRI done to see what was going on with my back. Day after

I got up and vision was crossed. I had papaladema (msp) where the brain

acts like it has a tumore, but there is lots of swelling behind the eyes and

pressure causing crossed vision. Went on prednisone for 8 weeks. Eye

specialist said that it was my Rheumatoid causing it and had nothing to do with

the MRI. I had a cataract removed in 1997 and episcleritis flared up to the

point that I could not see. Sight did not come back in my right eye due to

extreme pressure and such a long time on the prednisone and the severity of

the episcleritis. Laser did nothing to help me see. My folks did not

believe that I was sick until I ended up with an infection in 2001 and had to

have surgery. Spent 9 days in the hospital on IV antibiotics. My folks laughed

and talked and made fun of how I walked and cried constantly from pain. I

started trying to act like I was not in pain when around them. Put on fake

smiles and was wretched with pain all the time. I even took pain meds to

kill any pain that I had...vicodin (msp), xanax, lortab. They kept me

functioning also when I started back to work. You have to be in a persons shoes

or

position with RA to truly understand what the pain is like and the other

symptoms we go through. I would not wish this pain or disease on any of my

worst enemies. Most people that I know with RA will not talk or try not to

show how they feel. Especially men.

Irish

[Guest guest]

" My question is to you, looking back, would you have done anything

different in dealing with the RA? What advise would you give to someone who is

just beginning this new life...with RA?

My life as I knew it seems to be over. "

I do not see my life as over just differently do things than

healthy/regular folk. I would have done differently....stayed off work when I

was

suppose to and gotten better before returning back to work. Done what my

doctors

told me to do and started on the RA meds sooner. Took better care of myself

and got the rest that I needed...not work 70/80 hours a week killing

myself for that company for such little pay. The advice that I would give is to

get the help with this RA disease as soon as you can. Do not wait until

things get too worse to treat. This affects every part of my body inside and

out and I am having to keep my RA under control more now than I would have if

gotten help earlier in my life to control. Let others think what they want

about how you feel and what you are limited in doing. I now try each day

for 1 hour or more to take care of and do something for just me.

Irish

[Guest guest]

OK. Belated birthday sympathy to you, Sue.

What was that commercial from years ago? You're not getting older,

you're getting better!

Not an MD

On Sun, Oct 25, 2009 at 1:42 PM, marysue <marysue@...> wrote:

> Thanks, . Maybe you should have sent a sympathy card, LOL.

>

> Sue

[Guest guest]

I have been having obvious symptoms for 3 years now. I've lost the  movement in

my middle finger of my right hand and fear I'm losing it in my wrist.

Today I hurt all over and feel sick I am so fatigued and don't think I can make

it to work tomorrow. I fear of losing my job.

So far, I haven't started the methotraxate the doctor gave me on Thursday. I'm

dreading it but know I have to do something.

My question is to you, looking back, would you have done anything different in

dealing with the RA? What advise would you give to someone who is just beginng

this new life...with RA?

My life as I knew it seems to be over.

It seems no one has much hope.

________________________________

From: " iafowl31260@... " <iafowl31260@...>

Sent: Sun, October 25, 2009 4:37:57 PM

Subject: Re: [ ] Re: Some questions please

 

I do not work now. I worked 15 years at a wire production plant where

I stood all day lifting anywhere from 2 lb. rolls of wire aluminum and

fiberglass to 108 feet long weighing 90 lbs. or more depending on how much

material was rolled up. The reason I had to resign from my job was due to I

passed out at work due to severe pain and became paralyzed in my right leg

with some numbness in my left from a pinched nerve and an injury that I

sustained while working. After injuring myself at work I did not go home and

rest the 3 days I was suppose to and made the injury worse. Went to the

bathroom and awake in the ER several hours later. I have had 3 back surgeries

due

to the injury and the RA was already there, but got worse after the

injury. I then after getting better without a clearance from my doctors went

back

to work for 7 months and got to where I could not sit down or stand

without having to have help getting up or sitting down. I ended up back in the

hospital and was told that I was to ill to do the work I once did and over

the years the RA and other health problems have kept me almost home bound

with assistance from a cane and other devices. Yes I have been through more

things with this RA than people know. I started having symptoms in 1980 after

I got hurt. I was 20 when I was told I had simple arthritis by my PCP when

I had problems with my hands. I was 29 years old when I was officially

diagnosed with RA. Did not get treated for RA until 1993 due to insurance

problems and financially not able to handle the meds. I am 49 now.

Irish

[Guest guest]

Thanks.

I've made up my mind to apply for disabilty. I can't keep it up.

Also, get one more opinion before I go on the methotrexate.

I don't know why I'm so afraid of taking that first dose.

________________________________

From: " iafowl31260@... " <iafowl31260@...>

Sent: Sun, October 25, 2009 8:42:56 PM

Subject: Re: [ ] Re: Some questions please

 

" My question is to you, looking back, would you have done anything

different in dealing with the RA? What advise would you give to someone who is

just beginning this new life...with RA?

My life as I knew it seems to be over. "

I do not see my life as over just differently do things than

healthy/regular folk. I would have done differently. ...stayed off work when I

was

suppose to and gotten better before returning back to work. Done what my doctors

told me to do and started on the RA meds sooner. Took better care of myself

and got the rest that I needed...not work 70/80 hours a week killing

myself for that company for such little pay. The advice that I would give is to

get the help with this RA disease as soon as you can. Do not wait until

things get too worse to treat. This affects every part of my body inside and

out and I am having to keep my RA under control more now than I would have if

gotten help earlier in my life to control. Let others think what they want

about how you feel and what you are limited in doing. I now try each day

for 1 hour or more to take care of and do something for just me.

Irish

[Guest guest]

Judith,

If I had to do it over, I would do the same thing. I would go to a

good rheumatologist and make sure that he treated my RA aggressively

from the very beginning.

My rheumy started me on MTX, also. When I read the brochure he gave

me, I thought to myself that if it didn't kill me, it might help me.

So I weighed the risks against the possible benefits, and took it.

Later, he also put me on Arava.

The third med he put me on was Enbrel. I've been on it for over six

years, and it works very well for me. It works so well that I am using

it just half as often now as I used to, still with the same good

results.

I am living proof that there is hope with RA. It just takes time for

your rheumy to find the right cocktail of meds for your individual case.

Good luck, and go ahead and start the MTX.

Sue

On Oct 25, 2009, at 9:30 PM, Judith Beedie wrote:

> I have been having obvious symptoms for 3 years now. I've lost the

> movement in my middle finger of my right hand and fear I'm losing it

> in my wrist.

> Today I hurt all over and feel sick I am so fatigued and don't think

> I can make it to work tomorrow. I fear of losing my job.

> So far, I haven't started the methotraxate the doctor gave me on

> Thursday. I'm dreading it but know I have to do something.

> My question is to you, looking back, would you have done anything

> different in dealing with the RA? What advise would you give to

> someone who is just beginng this new life...with RA?

> My life as I knew it seems to be over.

> It seems no one has much hope.

[Guest guest]

In a message dated 10/25/2009 8:34:11 P.M. Central Daylight Time,

judithbeedie@... writes:

My question is to you, looking back, would you have done anything

different in dealing with the RA? What advise would you give to someone who is

just

beginng this new life...with RA? >

The only thing I would have done differently is see my rheumatologist

earlier so he could start me on the drugs earlier. My PC doc at the time didn't

really listen to me and discouraged me from seeing a rheumatologist. So I

wasted about three months.

It's been about 18 months since my diagnosis now and most days I feel like

a normal person at this time. I do feel like I'm getting a cold, though and

worry about my immune system.

dd

[Guest guest]

By the time I got to the RA clinic, I was unable to get out of a chair (or

off the toilet). He started me on Prednisone -- 25 or 30 mg. Three hours

after leaving his office, I taught my line dance class. It was amazing. Every

two weeks, I lowered the Prednisone until I got down to 5 mg a day, which

I still take.

He had to try certain drugs in a certain order. So he started with

Methotrexate. It started to help, but it made me sick a couple of days a week. I

know other people take it with no problems. He had to start with it because

it helps the most people.

Then we tried Arava, which was not helpful for me.

Then he tried Remicade, but I was still taking a small dose of Mtx. Just

recently, he switched to Remicade with a small dose of Imuran. That has

worked the best so far.

It took patience. I rarely have days of fatigue right now. Last Thursday I

had shooting pains in my toe joints. But then they went away.

dd

In a message dated 10/26/2009 8:48:05 A.M. Central Daylight Time,

judithbeedie@... writes:

Hello,

What were the first drugs you tried? How well did you tolerate them?

Judith