Re: Newly diagnoses with RA (from Jennie)

[Guest guest]

Beth,

If you are having liver issues, then methotrexate (mtx for short) is

probably not an option for you. If Plaquinil is making your eye

problems worse, then that one might not be the best drug for you

either. Has your rheumatologist mentioned biological drugs? The

three brand names are Enbrel, Remicade and Humira (I take Humira).

These are the best drugs available to treat RA, although they do not

work effectively for everyone. They are expensive and insurance

usually only pais for a biological if the patient does not respond

well or fully to one of the other DMARDs (plaquinil, mtx, etc.). But

since you have health issues that make these other DMARDs not good

options, you might be able to try a biologic sooner. Also, since you

are not working, I am not sure what your health insurance picture

is. There are programs for people without insurance coverage to help

pay for prescriptions.

Here is my very basic description of biologicals: they are made of

proteins called TNF blockers. For some reason people with RA produce

too much TNF protein (the protein that keeps humans from having

tumors all over all the time, it's short for Tumor Necrosis Factor,

but I am sure I spelled that wrong). So the TNF blockers block the

excess TNF and miraculously reduce or eliminate RA symptoms and the

progression of the disease. They are best used in connection with

another DMARD like mtx, but not always.

Your rheumy should be helping you get back to fully functioning as

soon as possible. It's good you are seeing him in only two weeks,

but do a little research on other RA drugs so you can be prepared to

discuss other treatment options with him when you go. I see you

asked in another post about antibiotic treatment. This works well

for some, but usually people that initially have non-aggressive RA.

I don't know anything about elevated liver enzymes in connection with

RA. My liver is monitored because I am on mtx, but I don't know if

it's because of enzymes. Good question though, someone else here

might know the answer.

Jennie

> Jennie,

>

>

> I have another appointment in two weeks with the Rhematologist to

disucss further options. So, I will know more then.

>

> I also have elevated Liver enzymes (am not a drinker nor do I take

drugs, well until now). THe doctor is concerned; and is doing more

blood work next week. Do you know anything about elevated liver

enzymes in conjunction with RA?

>

> Still having difficulty accepting the reality of all of this.

Looking to wake up from this nightmare any morning now!

>

[Guest guest]

Beth,

If you are having liver issues, then methotrexate (mtx for short) is

probably not an option for you. If Plaquinil is making your eye

problems worse, then that one might not be the best drug for you

either. Has your rheumatologist mentioned biological drugs? The

three brand names are Enbrel, Remicade and Humira (I take Humira).

These are the best drugs available to treat RA, although they do not

work effectively for everyone. They are expensive and insurance

usually only pais for a biological if the patient does not respond

well or fully to one of the other DMARDs (plaquinil, mtx, etc.). But

since you have health issues that make these other DMARDs not good

options, you might be able to try a biologic sooner. Also, since you

are not working, I am not sure what your health insurance picture

is. There are programs for people without insurance coverage to help

pay for prescriptions.

Here is my very basic description of biologicals: they are made of

proteins called TNF blockers. For some reason people with RA produce

too much TNF protein (the protein that keeps humans from having

tumors all over all the time, it's short for Tumor Necrosis Factor,

but I am sure I spelled that wrong). So the TNF blockers block the

excess TNF and miraculously reduce or eliminate RA symptoms and the

progression of the disease. They are best used in connection with

another DMARD like mtx, but not always.

Your rheumy should be helping you get back to fully functioning as

soon as possible. It's good you are seeing him in only two weeks,

but do a little research on other RA drugs so you can be prepared to

discuss other treatment options with him when you go. I see you

asked in another post about antibiotic treatment. This works well

for some, but usually people that initially have non-aggressive RA.

I don't know anything about elevated liver enzymes in connection with

RA. My liver is monitored because I am on mtx, but I don't know if

it's because of enzymes. Good question though, someone else here

might know the answer.

Jennie

> Jennie,

>

>

> I have another appointment in two weeks with the Rhematologist to

disucss further options. So, I will know more then.

>

> I also have elevated Liver enzymes (am not a drinker nor do I take

drugs, well until now). THe doctor is concerned; and is doing more

blood work next week. Do you know anything about elevated liver

enzymes in conjunction with RA?

>

> Still having difficulty accepting the reality of all of this.

Looking to wake up from this nightmare any morning now!

>

[Guest guest]

Jennie G <xponder70@...> wrote: Beth,

If you are having liver issues, then methotrexate (mtx for short) is

probably not an option for you. If Plaquinil is making your eye

problems worse, then that one might not be the best drug for you

either. Has your rheumatologist mentioned biological drugs? The

three brand names are Enbrel, Remicade and Humira (I take Humira).

These are the best drugs available to treat RA, although they do not

work effectively for everyone. They are expensive and insurance

usually only pais for a biological if the patient does not respond

well or fully to one of the other DMARDs (plaquinil, mtx, etc.). But

since you have health issues that make these other DMARDs not good

options, you might be able to try a biologic sooner. Also, since you

are not working, I am not sure what your health insurance picture

is. There are programs for people without insurance coverage to help

pay for prescriptions.

Here is my very basic description of biologicals: they are made of

proteins called TNF blockers. For some reason people with RA produce

too much TNF protein (the protein that keeps humans from having

tumors all over all the time, it's short for Tumor Necrosis Factor,

but I am sure I spelled that wrong). So the TNF blockers block the

excess TNF and miraculously reduce or eliminate RA symptoms and the

progression of the disease. They are best used in connection with

another DMARD like mtx, but not always.

Your rheumy should be helping you get back to fully functioning as

soon as possible. It's good you are seeing him in only two weeks,

but do a little research on other RA drugs so you can be prepared to

discuss other treatment options with him when you go. I see you

asked in another post about antibiotic treatment. This works well

for some, but usually people that initially have non-aggressive RA.

I don't know anything about elevated liver enzymes in connection with

RA. My liver is monitored because I am on mtx, but I don't know if

it's because of enzymes. Good question though, someone else here

might know the answer.

Jennie

> Jennie,

>

>

> I have another appointment in two weeks with the Rhematologist to

disucss further options. So, I will know more then.

>

> I also have elevated Liver enzymes (am not a drinker nor do I take

drugs, well until now). THe doctor is concerned; and is doing more

blood work next week. Do you know anything about elevated liver

enzymes in conjunction with RA?

>

> Still having difficulty accepting the reality of all of this.

Looking to wake up from this nightmare any morning now!

>

[Guest guest]

Jennie G <xponder70@...> wrote: Beth,

If you are having liver issues, then methotrexate (mtx for short) is

probably not an option for you. If Plaquinil is making your eye

problems worse, then that one might not be the best drug for you

either. Has your rheumatologist mentioned biological drugs? The

three brand names are Enbrel, Remicade and Humira (I take Humira).

These are the best drugs available to treat RA, although they do not

work effectively for everyone. They are expensive and insurance

usually only pais for a biological if the patient does not respond

well or fully to one of the other DMARDs (plaquinil, mtx, etc.). But

since you have health issues that make these other DMARDs not good

options, you might be able to try a biologic sooner. Also, since you

are not working, I am not sure what your health insurance picture

is. There are programs for people without insurance coverage to help

pay for prescriptions.

Here is my very basic description of biologicals: they are made of

proteins called TNF blockers. For some reason people with RA produce

too much TNF protein (the protein that keeps humans from having

tumors all over all the time, it's short for Tumor Necrosis Factor,

but I am sure I spelled that wrong). So the TNF blockers block the

excess TNF and miraculously reduce or eliminate RA symptoms and the

progression of the disease. They are best used in connection with

another DMARD like mtx, but not always.

Your rheumy should be helping you get back to fully functioning as

soon as possible. It's good you are seeing him in only two weeks,

but do a little research on other RA drugs so you can be prepared to

discuss other treatment options with him when you go. I see you

asked in another post about antibiotic treatment. This works well

for some, but usually people that initially have non-aggressive RA.

I don't know anything about elevated liver enzymes in connection with

RA. My liver is monitored because I am on mtx, but I don't know if

it's because of enzymes. Good question though, someone else here

might know the answer.

Jennie

> Jennie,

>

>

> I have another appointment in two weeks with the Rhematologist to

disucss further options. So, I will know more then.

>

> I also have elevated Liver enzymes (am not a drinker nor do I take

drugs, well until now). THe doctor is concerned; and is doing more

blood work next week. Do you know anything about elevated liver

enzymes in conjunction with RA?

>

> Still having difficulty accepting the reality of all of this.

Looking to wake up from this nightmare any morning now!

>

[Guest guest]

I am not sure about fully functional, but it is possible to be

functional. You need to find medications that work for you. You

will always have a chronic illness. My main problem is fatigue

right now, and some minor side effects from mtx. But I have a 4

year old dd and I work full time. I have had two times when I was

not functioning. The first was the day I was put on prednisone. I

could barely move. The second was after being on mtx/prednisone

combo for a while and it just wasn't cutting it. I had no energy,

pain all the time and stiffness that lasted hours and hours each

morning. That is when I was put on Humira.

I can't do everything I used to be able to do. Going to the park

wiht my daughter wipes me out, but I can do it if I take a nap

before or after. Walking very much kills my feet. But I do work

out at the gym and lift weights (exercise is important for RA, once

your symptoms are under control). Stress or overdoing it cause the

RA to flare up, but most of the time I am in good shape because my

meds are working well for me.

It's not only possible to be functioning, it should be the goal. Of

course there are situations where people can't afford the right

meds, can't find a good rheumatologist, their RA was untreated for a

long time and there is a lot of joint damage, or if the meds

available today simply do not work for them. But there is more hope

today for an RA patient than there ever was in the past.

Jennie

--- In , LaBar <mlabar7661@y...>

wrote:

>

> Is fully functioning really possible? Sometimes I feel hopeful.

Others, I feel that I will never feel the same again.

>

[Guest guest]

I am not sure about fully functional, but it is possible to be

functional. You need to find medications that work for you. You

will always have a chronic illness. My main problem is fatigue

right now, and some minor side effects from mtx. But I have a 4

year old dd and I work full time. I have had two times when I was

not functioning. The first was the day I was put on prednisone. I

could barely move. The second was after being on mtx/prednisone

combo for a while and it just wasn't cutting it. I had no energy,

pain all the time and stiffness that lasted hours and hours each

morning. That is when I was put on Humira.

I can't do everything I used to be able to do. Going to the park

wiht my daughter wipes me out, but I can do it if I take a nap

before or after. Walking very much kills my feet. But I do work

out at the gym and lift weights (exercise is important for RA, once

your symptoms are under control). Stress or overdoing it cause the

RA to flare up, but most of the time I am in good shape because my

meds are working well for me.

It's not only possible to be functioning, it should be the goal. Of

course there are situations where people can't afford the right

meds, can't find a good rheumatologist, their RA was untreated for a

long time and there is a lot of joint damage, or if the meds

available today simply do not work for them. But there is more hope

today for an RA patient than there ever was in the past.

Jennie

>

> Is fully functioning really possible? Sometimes I feel hopeful.

Others, I feel that I will never feel the same again.

>

[Guest guest]

Jennie,

Thanks for the hope! It's funny because I don't fit neatly into the criteria

for RA. For example, I am not more stiff in the AM than I am any other time of

the day. I would say that was true when the symptoms initially began. In

addition, I am having muscle twitches and involuntary muscle movements in my

feet, ankles, thighs, and shoulders. I am seeing a neurologist who is doing a

Cervical spine MRI, a brain MRI, and an EEG of the muscles. My pain is often in

the muscles as well as the joints and my joints don't swell to the degree that I

am reading; except for my right knee which even goes against the nature of RA to

hit both joints at the same time.

Fatigue is one of the hardest battles I am having. In addition, I am always on

guard for signs of depression especially since I live alone and spend most of my

time alone now since I have not been able to work.

I appreciate your promise of hope. Yet, all I really want is to return to my

normal self! So, denial is a good coping skill right now. There is always the

possibility that this is just a virus that can be treated!

That thought leads me to think about the root cause of RA. Have you and your

doctor explored the source of your RA?

THanks again,

Beth

Jennie G <xponder70@...> wrote:

I am not sure about fully functional, but it is possible to be

functional. You need to find medications that work for you. You

will always have a chronic illness. My main problem is fatigue

right now, and some minor side effects from mtx. But I have a 4

year old dd and I work full time. I have had two times when I was

not functioning. The first was the day I was put on prednisone. I

could barely move. The second was after being on mtx/prednisone

combo for a while and it just wasn't cutting it. I had no energy,

pain all the time and stiffness that lasted hours and hours each

morning. That is when I was put on Humira.

I can't do everything I used to be able to do. Going to the park

wiht my daughter wipes me out, but I can do it if I take a nap

before or after. Walking very much kills my feet. But I do work

out at the gym and lift weights (exercise is important for RA, once

your symptoms are under control). Stress or overdoing it cause the

RA to flare up, but most of the time I am in good shape because my

meds are working well for me.

It's not only possible to be functioning, it should be the goal. Of

course there are situations where people can't afford the right

meds, can't find a good rheumatologist, their RA was untreated for a

long time and there is a lot of joint damage, or if the meds

available today simply do not work for them. But there is more hope

today for an RA patient than there ever was in the past.

Jennie

--- In , LaBar <mlabar7661@y...>

wrote:

>

> Is fully functioning really possible? Sometimes I feel hopeful.

Others, I feel that I will never feel the same again.

>

[Guest guest]

Jennie,

Thanks for the hope! It's funny because I don't fit neatly into the criteria

for RA. For example, I am not more stiff in the AM than I am any other time of

the day. I would say that was true when the symptoms initially began. In

addition, I am having muscle twitches and involuntary muscle movements in my

feet, ankles, thighs, and shoulders. I am seeing a neurologist who is doing a

Cervical spine MRI, a brain MRI, and an EEG of the muscles. My pain is often in

the muscles as well as the joints and my joints don't swell to the degree that I

am reading; except for my right knee which even goes against the nature of RA to

hit both joints at the same time.

Fatigue is one of the hardest battles I am having. In addition, I am always on

guard for signs of depression especially since I live alone and spend most of my

time alone now since I have not been able to work.

I appreciate your promise of hope. Yet, all I really want is to return to my

normal self! So, denial is a good coping skill right now. There is always the

possibility that this is just a virus that can be treated!

That thought leads me to think about the root cause of RA. Have you and your

doctor explored the source of your RA?

THanks again,

Beth

Jennie G <xponder70@...> wrote:

I am not sure about fully functional, but it is possible to be

functional. You need to find medications that work for you. You

will always have a chronic illness. My main problem is fatigue

right now, and some minor side effects from mtx. But I have a 4

year old dd and I work full time. I have had two times when I was

not functioning. The first was the day I was put on prednisone. I

could barely move. The second was after being on mtx/prednisone

combo for a while and it just wasn't cutting it. I had no energy,

pain all the time and stiffness that lasted hours and hours each

morning. That is when I was put on Humira.

I can't do everything I used to be able to do. Going to the park

wiht my daughter wipes me out, but I can do it if I take a nap

before or after. Walking very much kills my feet. But I do work

out at the gym and lift weights (exercise is important for RA, once

your symptoms are under control). Stress or overdoing it cause the

RA to flare up, but most of the time I am in good shape because my

meds are working well for me.

It's not only possible to be functioning, it should be the goal. Of

course there are situations where people can't afford the right

meds, can't find a good rheumatologist, their RA was untreated for a

long time and there is a lot of joint damage, or if the meds

available today simply do not work for them. But there is more hope

today for an RA patient than there ever was in the past.

Jennie

>

> Is fully functioning really possible? Sometimes I feel hopeful.

Others, I feel that I will never feel the same again.

>

[Guest guest]

Beth,

They don't really understand RA that well, although they are doing

research and learning more all the time.

I believe the theory that you need two things to get RA, the RA gene

and an environmental trigger. So you can get the gene, but that

doesn't mean you will get RA. My environmental trigger was extreme

job stress, two deaths in the family and two funerals in two

different states, one wedding and a baby shower - and in the middle

of all that, a horrible stomach virus. It all occured in one weeks

time. During this week, my 18 month old also had the stomach virus

before, on the way to, and during the plane ride from PA to CO. It

was a hellish week. My mom and her cousin also have RA. We were all

in our 30s, had extreme job and other life stress and got very sick

right before RA symptoms started.

Jennie

>

> That thought leads me to think about the root cause of RA. Have

you and your doctor explored the source of your RA?

[Guest guest]

Beth,

They don't really understand RA that well, although they are doing

research and learning more all the time.

I believe the theory that you need two things to get RA, the RA gene

and an environmental trigger. So you can get the gene, but that

doesn't mean you will get RA. My environmental trigger was extreme

job stress, two deaths in the family and two funerals in two

different states, one wedding and a baby shower - and in the middle

of all that, a horrible stomach virus. It all occured in one weeks

time. During this week, my 18 month old also had the stomach virus

before, on the way to, and during the plane ride from PA to CO. It

was a hellish week. My mom and her cousin also have RA. We were all

in our 30s, had extreme job and other life stress and got very sick

right before RA symptoms started.

Jennie

>

> That thought leads me to think about the root cause of RA. Have

you and your doctor explored the source of your RA?

[Guest guest]

Jennie,

I hate to think that this was triggered by extreme stress. But, I also cannot

say that I was not dealing with extreme stressors. The funny thing is that the

stressors were being eliminated and things were beginning to look up. I, too

had a virus about one year ago and in retrospect have not felt myself since

then.

THanks again for all the good information.

Beth

Jennie G <xponder70@...> wrote:

Beth,

They don't really understand RA that well, although they are doing

research and learning more all the time.

I believe the theory that you need two things to get RA, the RA gene

and an environmental trigger. So you can get the gene, but that

doesn't mean you will get RA. My environmental trigger was extreme

job stress, two deaths in the family and two funerals in two

different states, one wedding and a baby shower - and in the middle

of all that, a horrible stomach virus. It all occured in one weeks

time. During this week, my 18 month old also had the stomach virus

before, on the way to, and during the plane ride from PA to CO. It

was a hellish week. My mom and her cousin also have RA. We were all

in our 30s, had extreme job and other life stress and got very sick

right before RA symptoms started.

Jennie

>

> That thought leads me to think about the root cause of RA. Have

you and your doctor explored the source of your RA?

[Guest guest]

Jennie,

I hate to think that this was triggered by extreme stress. But, I also cannot

say that I was not dealing with extreme stressors. The funny thing is that the

stressors were being eliminated and things were beginning to look up. I, too

had a virus about one year ago and in retrospect have not felt myself since

then.

THanks again for all the good information.

Beth

Jennie G <xponder70@...> wrote:

Beth,

They don't really understand RA that well, although they are doing

research and learning more all the time.

I believe the theory that you need two things to get RA, the RA gene

and an environmental trigger. So you can get the gene, but that

doesn't mean you will get RA. My environmental trigger was extreme

job stress, two deaths in the family and two funerals in two

different states, one wedding and a baby shower - and in the middle

of all that, a horrible stomach virus. It all occured in one weeks

time. During this week, my 18 month old also had the stomach virus

before, on the way to, and during the plane ride from PA to CO. It

was a hellish week. My mom and her cousin also have RA. We were all

in our 30s, had extreme job and other life stress and got very sick

right before RA symptoms started.

Jennie

>

> That thought leads me to think about the root cause of RA. Have

you and your doctor explored the source of your RA?

[Guest guest]

When my RA started, I had just finished a 'Christmastime seminar' for men

from all over the world that worked for me. It was certainly stressful to

get all that preparation done in time and not taking time to visit the

doctor about my case of the flu during that time. My doctor explained that

my immune system's antibodies fought a hard battle to kill the flu bug, and

when they had no more to do, they attacked anything they could find. Since I

have a strong family history for RA, I was at the right point at the right

time for it to grow. It makes sense to me.

I haven't had the regular symptoms, either. Some mornings I'm ok, then fall

apart during the day or evening. It's not predictable even after 15 years of

treatment. I do everything by ear, depending on my body's plans.

Dennis- feeling wonderful today!

Re: [ ] Re: Newly diagnoses with RA (from Jennie)

> Jennie,

>

> I hate to think that this was triggered by extreme stress. But, I also

> cannot say that I was not dealing with extreme stressors. The funny thing

> is that the stressors were being eliminated and things were beginning to

> look up. I, too had a virus about one year ago and in retrospect have not

> felt myself since then.

>

> THanks again for all the good information.

>

> Beth

>

> Jennie G <xponder70@...> wrote:

> Beth,

>

> They don't really understand RA that well, although they are doing

> research and learning more all the time.

>

> I believe the theory that you need two things to get RA, the RA gene

> and an environmental trigger.

[Guest guest]

When my RA started, I had just finished a 'Christmastime seminar' for men

from all over the world that worked for me. It was certainly stressful to

get all that preparation done in time and not taking time to visit the

doctor about my case of the flu during that time. My doctor explained that

my immune system's antibodies fought a hard battle to kill the flu bug, and

when they had no more to do, they attacked anything they could find. Since I

have a strong family history for RA, I was at the right point at the right

time for it to grow. It makes sense to me.

I haven't had the regular symptoms, either. Some mornings I'm ok, then fall

apart during the day or evening. It's not predictable even after 15 years of

treatment. I do everything by ear, depending on my body's plans.

Dennis- feeling wonderful today!

Re: [ ] Re: Newly diagnoses with RA (from Jennie)

> Jennie,

>

> I hate to think that this was triggered by extreme stress. But, I also

> cannot say that I was not dealing with extreme stressors. The funny thing

> is that the stressors were being eliminated and things were beginning to

> look up. I, too had a virus about one year ago and in retrospect have not

> felt myself since then.

>

> THanks again for all the good information.

>

> Beth

>

> Jennie G <xponder70@...> wrote:

> Beth,

>

> They don't really understand RA that well, although they are doing

> research and learning more all the time.

>

> I believe the theory that you need two things to get RA, the RA gene

> and an environmental trigger.