Re: RA & Other Arthritis Q's

[Guest guest]

Hi April..

Let me see if I can answer some for you..

(2) Do most people get on Methetrexate (sp) for RA and is that a low dose

chemo?

Does it make you nausious? Is it worth it?

I take the Methotrexate. I take it in the brand Trexall, 25mg pill once a

week. It make me absolutely exhausted the first couple of times I took it, but

now it doesn't really affect me. Yes it is a form of chemo. Just make sure you

keep getting your blood work done. It seems like the people who are on the

injections have more trouble, but that is just my observation, and I could be

wrong. Make sure you are taking folic acid with it too... It didn't really

affect my RA that much, but my understanding is that the combination of the MTX

and the remicade or another biological med are supposed to be more effective.

So, I am also on the Remicade as are a few others on this list. I have only had

two Remicade infusions, go for my third on Monday. Based on the major flare I

have been in for the past week they will likely increase my dose on Monday.

(4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

I think it is really hard for my family to understand the pain I am in, and

when it makes me so tired they really don't understand how I can just go to

sleep for no apparent reason. To be honest I don't really understand it either,

and I certainly don't like it!! I think my husband tries to live in denial most

of the time, because when he does try to come to terms with what is happening to

me it scares him to death. I really can't blame him. I would live in denial if

I could too. Heck, I still try to! But then I try to do something like open a

bottle, or pick up the milk jug etc.. and I am slammed back into reality...

Ok, I am not really helping you, I am having a bad week. What I will say is

there are good weeks and bad. Take the good and try to focus on them and do

your very best to be patient not only with your doctor, but also yourself.. It

is a hard lesson for all of us and it just isn't fair!

Semalee

[Guest guest]

Hi April..

Let me see if I can answer some for you..

(2) Do most people get on Methetrexate (sp) for RA and is that a low dose

chemo?

Does it make you nausious? Is it worth it?

I take the Methotrexate. I take it in the brand Trexall, 25mg pill once a

week. It make me absolutely exhausted the first couple of times I took it, but

now it doesn't really affect me. Yes it is a form of chemo. Just make sure you

keep getting your blood work done. It seems like the people who are on the

injections have more trouble, but that is just my observation, and I could be

wrong. Make sure you are taking folic acid with it too... It didn't really

affect my RA that much, but my understanding is that the combination of the MTX

and the remicade or another biological med are supposed to be more effective.

So, I am also on the Remicade as are a few others on this list. I have only had

two Remicade infusions, go for my third on Monday. Based on the major flare I

have been in for the past week they will likely increase my dose on Monday.

(4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

I think it is really hard for my family to understand the pain I am in, and

when it makes me so tired they really don't understand how I can just go to

sleep for no apparent reason. To be honest I don't really understand it either,

and I certainly don't like it!! I think my husband tries to live in denial most

of the time, because when he does try to come to terms with what is happening to

me it scares him to death. I really can't blame him. I would live in denial if

I could too. Heck, I still try to! But then I try to do something like open a

bottle, or pick up the milk jug etc.. and I am slammed back into reality...

Ok, I am not really helping you, I am having a bad week. What I will say is

there are good weeks and bad. Take the good and try to focus on them and do

your very best to be patient not only with your doctor, but also yourself.. It

is a hard lesson for all of us and it just isn't fair!

Semalee

[Guest guest]

April,

My RA was diagnosised with a combination fo blood tests, physical exam, xrays

and my report of symtoms. Not everyone with RA has a positive RA factor

test. I was one of those people for the first 18 months or so after I was

diagnosised. Then one test was positive and a few months after that my RA

factor

test was negative. So as my rheummy explained to me the RA factor just lets him

know how active the disease is. Sed rate is a better predictor for me.

I started on Methotexate pills and they made me deathly ill. I had nausea,

vomiting, diarrhea, dizziness, mouth sores, eye sores, throat sores, severe

fatigue and drug induced pneumonitis. This is a side effect of Methotrexate

that

can be fatal if left untreated. It starts as a bad dry hacking cough and

being short of breath. My doc stopped the methotrexate immediately to allow my

lungs to heal. I restarted afew weeks later I restarted methotrexate

injections with the same side effects just not as severe. I was also taking

high doses

of folic acid daily and it got so bad with the sores that I was started on

leukovorin. Methotrexate does require frequent bloodwork to check liver enzymes

as well as to make sure you are not getting too depressed. I developed

anemia as well as low platelets on Methotrexate which my rheummy thought was no

big

deal byt my internal med doc disagreed. I decided on my own the side effects

were not work the little bit of good if any good the drug was doing. Yes

this drug is chemo but used in far smaller dosages than is used to treat cancer.

For me if this is what a cancer patient has to go through they can keep this

stuff. For me Methotrexate was NOT worth all the misery and suffering I went

though will taking it. I was took sick to do anything.

For me the steriods really helped when I was first diagnosised. I could

never take steriods for long periods of time or in high dosages. They make me

very agressive and pyschotic. I also suffer from insonmia while on them. So I

chose to skip the steriods if at all possible. I have gotten steroid

injections into the affected joint to give some immediate relief. My doc mixs

the

steriods with lidocaine so you get immediate relief.

My family is sort of indifferent. They really don't say much. Then again

neither do I.

Toni

In a message dated 11/26/2004 9:51:44 PM Central Standard Time,

writes:

Date: Fri, 26 Nov 2004 11:43:03 -0800 (PST)

From: April <aprilsruss@...>

Subject: RA & Other Arthritis Q's

Hope you all had a wonderful Thanksgiving!

I am " New " and I have a few questions:

(1) How do you find out if you have RA in all your joints or if you have

another type of arthritis in others? Also, is there " Blood Tests " to find that

out?

(2) Do most people get on Methetrexate (sp) for RA and is that a low dose

chemo?

Does it make you nausious? Is it worth it?

(3) Can I skip steroids if doc says I should take them?

(4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

Thanks and Blessings,

April

[Guest guest]

April,

My RA was diagnosised with a combination fo blood tests, physical exam, xrays

and my report of symtoms. Not everyone with RA has a positive RA factor

test. I was one of those people for the first 18 months or so after I was

diagnosised. Then one test was positive and a few months after that my RA

factor

test was negative. So as my rheummy explained to me the RA factor just lets him

know how active the disease is. Sed rate is a better predictor for me.

I started on Methotexate pills and they made me deathly ill. I had nausea,

vomiting, diarrhea, dizziness, mouth sores, eye sores, throat sores, severe

fatigue and drug induced pneumonitis. This is a side effect of Methotrexate

that

can be fatal if left untreated. It starts as a bad dry hacking cough and

being short of breath. My doc stopped the methotrexate immediately to allow my

lungs to heal. I restarted afew weeks later I restarted methotrexate

injections with the same side effects just not as severe. I was also taking

high doses

of folic acid daily and it got so bad with the sores that I was started on

leukovorin. Methotrexate does require frequent bloodwork to check liver enzymes

as well as to make sure you are not getting too depressed. I developed

anemia as well as low platelets on Methotrexate which my rheummy thought was no

big

deal byt my internal med doc disagreed. I decided on my own the side effects

were not work the little bit of good if any good the drug was doing. Yes

this drug is chemo but used in far smaller dosages than is used to treat cancer.

For me if this is what a cancer patient has to go through they can keep this

stuff. For me Methotrexate was NOT worth all the misery and suffering I went

though will taking it. I was took sick to do anything.

For me the steriods really helped when I was first diagnosised. I could

never take steriods for long periods of time or in high dosages. They make me

very agressive and pyschotic. I also suffer from insonmia while on them. So I

chose to skip the steriods if at all possible. I have gotten steroid

injections into the affected joint to give some immediate relief. My doc mixs

the

steriods with lidocaine so you get immediate relief.

My family is sort of indifferent. They really don't say much. Then again

neither do I.

Toni

In a message dated 11/26/2004 9:51:44 PM Central Standard Time,

writes:

Date: Fri, 26 Nov 2004 11:43:03 -0800 (PST)

From: April <aprilsruss@...>

Subject: RA & Other Arthritis Q's

Hope you all had a wonderful Thanksgiving!

I am " New " and I have a few questions:

(1) How do you find out if you have RA in all your joints or if you have

another type of arthritis in others? Also, is there " Blood Tests " to find that

out?

(2) Do most people get on Methetrexate (sp) for RA and is that a low dose

chemo?

Does it make you nausious? Is it worth it?

(3) Can I skip steroids if doc says I should take them?

(4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

Thanks and Blessings,

April

[Guest guest]

Welcome to the group, April! I would strongly recommend, as Marina did,

that you find an excellent rheumatologist.

In answer to your questions:

1) There are few blood tests in the realm of rheumatic disease

that are very specific and highly diagnostic of a particular condition.

Blood tests can give valuable clues but should be used in conjunction

with your history and clinical presentation in making a diagnosis. Even

those with a positive rheumatoid factor (RF) don't necessarily have RA.

In addition to X-rays or other imaging techniques, an experienced

physician can sometimes tell from the pattern of the joints involved or

the type of swelling what process is most likely to be the culprit.

2) Methotrexate (MTX) is very commonly used in RA and is one of the

most effective treatments available. It is a disease-modifying

antirheumatic drug (DMARD) and, for RA, is used in dosages far lower

than in the treatment of cancer. It's been around for decades, so this

is a drug that has a known side-effect profile.

Not everyone experiences nausea. Generally, MTX by injection is more

effective and less likely to produce side effects than the oral form.

Folic acid supplementation is recommended to ameliorate any adverse

effects.

3) I wouldn't " skip " the steroids or any other medication prescribed

for you without discussing it with your physician. If you should decide

to take them, I don't recommend using steroids long term since the

side effects can be so serious. You should talk about how and when they

will be discontinued with your doctor.

4) How a family responds depends on many things, but lack of interest

or denial are common. We have many people here who have wonderfully

supportive families or loved ones, but I think they are in the minority.

We understand though!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RA & Other Arthritis Q's

>

>

>

> Hope you all had a wonderful Thanksgiving!

>

> I am " New " and I have a few questions:

>

> (1) How do you find out if you have RA in all your joints or if you

have another type of arthritis in others? Also, is there " Blood Tests "

to find that out?

>

> (2) Do most people get on Methetrexate (sp) for RA and is that a low

dose chemo?

> Does it make you nausious? Is it worth it?

>

> (3) Can I skip steroids if doc says I should take them?

>

> (4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

>

> Thanks and Blessings,

> April

[Guest guest]

Welcome to the group, April! I would strongly recommend, as Marina did,

that you find an excellent rheumatologist.

In answer to your questions:

1) There are few blood tests in the realm of rheumatic disease

that are very specific and highly diagnostic of a particular condition.

Blood tests can give valuable clues but should be used in conjunction

with your history and clinical presentation in making a diagnosis. Even

those with a positive rheumatoid factor (RF) don't necessarily have RA.

In addition to X-rays or other imaging techniques, an experienced

physician can sometimes tell from the pattern of the joints involved or

the type of swelling what process is most likely to be the culprit.

2) Methotrexate (MTX) is very commonly used in RA and is one of the

most effective treatments available. It is a disease-modifying

antirheumatic drug (DMARD) and, for RA, is used in dosages far lower

than in the treatment of cancer. It's been around for decades, so this

is a drug that has a known side-effect profile.

Not everyone experiences nausea. Generally, MTX by injection is more

effective and less likely to produce side effects than the oral form.

Folic acid supplementation is recommended to ameliorate any adverse

effects.

3) I wouldn't " skip " the steroids or any other medication prescribed

for you without discussing it with your physician. If you should decide

to take them, I don't recommend using steroids long term since the

side effects can be so serious. You should talk about how and when they

will be discontinued with your doctor.

4) How a family responds depends on many things, but lack of interest

or denial are common. We have many people here who have wonderfully

supportive families or loved ones, but I think they are in the minority.

We understand though!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RA & Other Arthritis Q's

>

>

>

> Hope you all had a wonderful Thanksgiving!

>

> I am " New " and I have a few questions:

>

> (1) How do you find out if you have RA in all your joints or if you

have another type of arthritis in others? Also, is there " Blood Tests "

to find that out?

>

> (2) Do most people get on Methetrexate (sp) for RA and is that a low

dose chemo?

> Does it make you nausious? Is it worth it?

>

> (3) Can I skip steroids if doc says I should take them?

>

> (4) How does your families respnd /treat you with the RA? Denial? No

interrest? and is that a normal reaction?

>

> Thanks and Blessings,

> April