Re: Took the advice

[Guest guest]

,

What you have done makes a whole lot of sense given your situation.

What the nurse said is true of diagnosing RA. It's very common to

try an RA drug and see if it relieves the symptoms. It is done

because it is so hard to diagnose RA. If you have RA symptoms and

they try prednisone or mtx and it helps, it is more like to be RA.

But that only works if you have active symptoms. Since you said your

pain, redness and swelling is completely gone, how would he know what

effect the drugs had? Also, it is not common to use Enbrel for

this. My rheumy took this approach but the first drug we tried was

Bextra. It worked for a while but then the RA progressed and we

moved to low doses of prednisone. We used mtx only after I was

officially diagnosed and Humira only after the mtx wasn't cutting it

and I was having 3 hours of stiffness every morning. Kind of hard to

get your child to daycare and make it to work when you've got that to

contend with.

One really hard thing if your symptoms are coming and going is to try

and see a rheumy when you have visible symtoms. My mom has had this

problem since the beginning. She'd go in and tell them how bad it

was the week before when she had called to make the appt - and they'd

say well it looks good now so lets keep the meds as they are and call

me if it happens again. Vicious cycle because the same thing would

happen the next time too. There isn't much you can do about it,

except be prepared since your symptoms aren't always present. So

maybe it is okay if your appt with a second rheumy is a while away,

since you have no symptoms right now. Like I said before, if it is

RA, it will come back, although it could come back in a different

place. My first problem was in a knee, then it was a shoulder, then

it bounced around a lot for a while before settling in mostly hands

and feet about a year later.

I am so happy your insurance is trying to get you into see someone

for a second opinion. I really hope they come through for you. A

second opinion is a necessity, not a luxury. As is having trust in

your doctor.

Jennie

> I just got off the phone with the nurse. I told her about my

> feelings on the diagnosis as well as how I felt about the

> medication. She seem upset that I was questioning the doctor but I

> think she understood. She did agree with me that a few weeks will

> not make any difference.

>

> She explained to me that the doctor likes to try patients on drugs

to

> see if they respond. If they do that just confirms his diagnosis.

I

> told her I prefer not to be an experiment especially since many of

> these drugs can have serious side effects and consquences. I would

> prefer to know that I either have RA or not.

>

> I am going to go try and see another doctor. I called the

insurance

> company and they are going to see if they can find someone else for

> me to see. I told them it was for second opinion. They said it

> might be as far as 200 miles away and I many have to wait a long

time

> for an appnt.

>

> She also offered to give me a copy of my tests and papers from this

> doc to carry to the new one. I thought that was nice of her. So

she

> is faxing them.

>

> So in the end we cancelled the next appnt, put the drugs on hold

and

> I have the insurance company hunting down another doc for second

> opinion.

>

> Thank you all for helping me get though a lot of this.

>

>

[Guest guest]

,

What you have done makes a whole lot of sense given your situation.

What the nurse said is true of diagnosing RA. It's very common to

try an RA drug and see if it relieves the symptoms. It is done

because it is so hard to diagnose RA. If you have RA symptoms and

they try prednisone or mtx and it helps, it is more like to be RA.

But that only works if you have active symptoms. Since you said your

pain, redness and swelling is completely gone, how would he know what

effect the drugs had? Also, it is not common to use Enbrel for

this. My rheumy took this approach but the first drug we tried was

Bextra. It worked for a while but then the RA progressed and we

moved to low doses of prednisone. We used mtx only after I was

officially diagnosed and Humira only after the mtx wasn't cutting it

and I was having 3 hours of stiffness every morning. Kind of hard to

get your child to daycare and make it to work when you've got that to

contend with.

One really hard thing if your symptoms are coming and going is to try

and see a rheumy when you have visible symtoms. My mom has had this

problem since the beginning. She'd go in and tell them how bad it

was the week before when she had called to make the appt - and they'd

say well it looks good now so lets keep the meds as they are and call

me if it happens again. Vicious cycle because the same thing would

happen the next time too. There isn't much you can do about it,

except be prepared since your symptoms aren't always present. So

maybe it is okay if your appt with a second rheumy is a while away,

since you have no symptoms right now. Like I said before, if it is

RA, it will come back, although it could come back in a different

place. My first problem was in a knee, then it was a shoulder, then

it bounced around a lot for a while before settling in mostly hands

and feet about a year later.

I am so happy your insurance is trying to get you into see someone

for a second opinion. I really hope they come through for you. A

second opinion is a necessity, not a luxury. As is having trust in

your doctor.

Jennie

> I just got off the phone with the nurse. I told her about my

> feelings on the diagnosis as well as how I felt about the

> medication. She seem upset that I was questioning the doctor but I

> think she understood. She did agree with me that a few weeks will

> not make any difference.

>

> She explained to me that the doctor likes to try patients on drugs

to

> see if they respond. If they do that just confirms his diagnosis.

I

> told her I prefer not to be an experiment especially since many of

> these drugs can have serious side effects and consquences. I would

> prefer to know that I either have RA or not.

>

> I am going to go try and see another doctor. I called the

insurance

> company and they are going to see if they can find someone else for

> me to see. I told them it was for second opinion. They said it

> might be as far as 200 miles away and I many have to wait a long

time

> for an appnt.

>

> She also offered to give me a copy of my tests and papers from this

> doc to carry to the new one. I thought that was nice of her. So

she

> is faxing them.

>

> So in the end we cancelled the next appnt, put the drugs on hold

and

> I have the insurance company hunting down another doc for second

> opinion.

>

> Thank you all for helping me get though a lot of this.

>

>

[Guest guest]

Jennie,

Thanks. I am just hoping to get to the bottom of all of this. At

first I was just going to ignor what the doc said and move on. But

then again what if he was right.

You are taking methotrexate right? Tell me how it works for you?

Do the shots hurt? Does this run in families. Because if it does no

one in my family has anything like this.

I haven't really discussed this with any other family members. I

don't want to upset people if there is really no problem. My mother

would get very upset. We have no children, but I bet getting a

little one ready when your in pain is not fun!

How long have you been on drugs and how long did they take to work

for you?

Sorry for all the questions. Just curious. I hope you don't mind.

> > I just got off the phone with the nurse. I told her about my

> > feelings on the diagnosis as well as how I felt about the

> > medication. She seem upset that I was questioning the doctor but

I

> > think she understood. She did agree with me that a few weeks

will

> > not make any difference.

> >

> > She explained to me that the doctor likes to try patients on

drugs

> to

> > see if they respond. If they do that just confirms his

diagnosis.

> I

> > told her I prefer not to be an experiment especially since many

of

> > these drugs can have serious side effects and consquences. I

would

> > prefer to know that I either have RA or not.

> >

> > I am going to go try and see another doctor. I called the

> insurance

> > company and they are going to see if they can find someone else

for

> > me to see. I told them it was for second opinion. They said it

> > might be as far as 200 miles away and I many have to wait a long

> time

> > for an appnt.

> >

> > She also offered to give me a copy of my tests and papers from

this

> > doc to carry to the new one. I thought that was nice of her. So

> she

> > is faxing them.

> >

> > So in the end we cancelled the next appnt, put the drugs on hold

> and

> > I have the insurance company hunting down another doc for second

> > opinion.

> >

> > Thank you all for helping me get though a lot of this.

> >

> >

[Guest guest]

Jennie,

Thanks. I am just hoping to get to the bottom of all of this. At

first I was just going to ignor what the doc said and move on. But

then again what if he was right.

You are taking methotrexate right? Tell me how it works for you?

Do the shots hurt? Does this run in families. Because if it does no

one in my family has anything like this.

I haven't really discussed this with any other family members. I

don't want to upset people if there is really no problem. My mother

would get very upset. We have no children, but I bet getting a

little one ready when your in pain is not fun!

How long have you been on drugs and how long did they take to work

for you?

Sorry for all the questions. Just curious. I hope you don't mind.

> > I just got off the phone with the nurse. I told her about my

> > feelings on the diagnosis as well as how I felt about the

> > medication. She seem upset that I was questioning the doctor but

I

> > think she understood. She did agree with me that a few weeks

will

> > not make any difference.

> >

> > She explained to me that the doctor likes to try patients on

drugs

> to

> > see if they respond. If they do that just confirms his

diagnosis.

> I

> > told her I prefer not to be an experiment especially since many

of

> > these drugs can have serious side effects and consquences. I

would

> > prefer to know that I either have RA or not.

> >

> > I am going to go try and see another doctor. I called the

> insurance

> > company and they are going to see if they can find someone else

for

> > me to see. I told them it was for second opinion. They said it

> > might be as far as 200 miles away and I many have to wait a long

> time

> > for an appnt.

> >

> > She also offered to give me a copy of my tests and papers from

this

> > doc to carry to the new one. I thought that was nice of her. So

> she

> > is faxing them.

> >

> > So in the end we cancelled the next appnt, put the drugs on hold

> and

> > I have the insurance company hunting down another doc for second

> > opinion.

> >

> > Thank you all for helping me get though a lot of this.

> >

> >

[Guest guest]

,

You are on the right track, definitely. I think you have done an

amazing job of digesting all this. You will get to the bottom of it,

and there is no need to tell your family if you feel it is best to

wait. You said you have your husband helping you wade through all

this information, and if the two of you can tackle it together for

now, that is wonderful.

RA does not usually run in families. Most people who have it are the

only one's in their family, and often don't even know another soul

with RA. There are families that do have several cases. My mom has

it as does her cousin. My belief based on the research I know of is

that you either have the RA gene or you don't. If you have it, that

does not mean you inherited it or that you will pass it along to the

next generation. So it's a non-hereditary gene. If you have the

gene, that does not mean you will get RA. You need an environmental

trigger. Something like severe illness where your immune system is

very low, or extreme stress, or a combination. They are researching

what causes RA and this is not a scientific fact. But it is what I

believe happens.

I never mind anyone asking me detailed questions. I know you have

read so many posts since you started here, but I'm the one having

some hair loss from the methotrexate. My RA symptoms started nearly

2 years ago. Because I had an elevated RA factor, symptoms similar

to RA and a family history of severe RA, we knew from the start that

is probably what it was. My rheumy was very conservative in

diagnosing me. He did not want to say I had RA and be wrong, even

though he admitted all the evidence pointed toward that.

Like I said I had this swelling and pain bouncing around to various

joints on my body. We tried Bextra and that helped. I was on

samples and the insurance wouldn't approve it, so I switched to

Vioxx. That did not help. Then the insurance approved Bextra but

when I went back on it, it didn't do me any good. We started

prednisone and I tell anyone even if you are going to be on even a

low dose for a short time, up your intake of calcium and be sure to

do weight bearing exercises to help prevent bone loss. I have some

bone loss discovered about 9 months after starting prednisone, and

although I'm 33 and that sucks, it can be controlled and monitored.

And it isn't as bad as being bedridden, which would be the case

without medication.

Eventually the prednisone was not controlling the pain/swelling

enough so that is when I was officially diagnosed and put on mtx.

For a year I had no side effects from the mtx. A couple months ago I

started loosing a little hair (you can't tell on my head even though

I do have thin hair, but I can see from my brush). We upped the dose

of folic acid (prescription strength folic acid helps prevent side

effects of mtx) and I thought it was helping but now I am not sure.

Next rheumy appt I'm going to ask if we can reduce the dose of mtx.

About 6 months after starting mtx, it just wasn't enough anymore.

Typical of RA since it is progressive. That is when we started

Humira. To me, Humira and the other biologicals (Enbrel and

Remicade) are not like other drugs. They are a protein and the

counterbalance another protein that is out of control in the bodies

of RA patients. My goal when I knew I had RA was to get on a

biological because they have very few side effects and they can stop

or slow the progession of the RA. See, my mom is completely disabled

from RA because they did not use to have medications that treated it

well. She is horribly disfigured and I never ever want to end up

like that. With the medications available know, my chances of living

a fully functional normal life is not only possible, it's probable.

My rheumy promised me I will never be as bad as my mom is and I'm

holding him to that promise. Oh, he promised my mom that too when

she came to visit. She was at the appt when he " officially "

diagnosed me and he told her flat out, " your daughter will not have

to face what you have had to face. "

One of the reasons I know I will be okay is that I was diagnosed

early and started treatment right away. It is a documented fact that

early treatment of RA with medication is the best way to prevent

joint damage and keep from being disabled later on from this

disease. It can make the difference between RA being managable or

not manageable. But it is also clear that RA is hard to diagnose and

you can't properly treat it if you aren't sure that is what you

have. I am glad your pain is gone for now, and it would be great if

it does stay away. But if not, we are all here for you.

Jennie

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

,

You are on the right track, definitely. I think you have done an

amazing job of digesting all this. You will get to the bottom of it,

and there is no need to tell your family if you feel it is best to

wait. You said you have your husband helping you wade through all

this information, and if the two of you can tackle it together for

now, that is wonderful.

RA does not usually run in families. Most people who have it are the

only one's in their family, and often don't even know another soul

with RA. There are families that do have several cases. My mom has

it as does her cousin. My belief based on the research I know of is

that you either have the RA gene or you don't. If you have it, that

does not mean you inherited it or that you will pass it along to the

next generation. So it's a non-hereditary gene. If you have the

gene, that does not mean you will get RA. You need an environmental

trigger. Something like severe illness where your immune system is

very low, or extreme stress, or a combination. They are researching

what causes RA and this is not a scientific fact. But it is what I

believe happens.

I never mind anyone asking me detailed questions. I know you have

read so many posts since you started here, but I'm the one having

some hair loss from the methotrexate. My RA symptoms started nearly

2 years ago. Because I had an elevated RA factor, symptoms similar

to RA and a family history of severe RA, we knew from the start that

is probably what it was. My rheumy was very conservative in

diagnosing me. He did not want to say I had RA and be wrong, even

though he admitted all the evidence pointed toward that.

Like I said I had this swelling and pain bouncing around to various

joints on my body. We tried Bextra and that helped. I was on

samples and the insurance wouldn't approve it, so I switched to

Vioxx. That did not help. Then the insurance approved Bextra but

when I went back on it, it didn't do me any good. We started

prednisone and I tell anyone even if you are going to be on even a

low dose for a short time, up your intake of calcium and be sure to

do weight bearing exercises to help prevent bone loss. I have some

bone loss discovered about 9 months after starting prednisone, and

although I'm 33 and that sucks, it can be controlled and monitored.

And it isn't as bad as being bedridden, which would be the case

without medication.

Eventually the prednisone was not controlling the pain/swelling

enough so that is when I was officially diagnosed and put on mtx.

For a year I had no side effects from the mtx. A couple months ago I

started loosing a little hair (you can't tell on my head even though

I do have thin hair, but I can see from my brush). We upped the dose

of folic acid (prescription strength folic acid helps prevent side

effects of mtx) and I thought it was helping but now I am not sure.

Next rheumy appt I'm going to ask if we can reduce the dose of mtx.

About 6 months after starting mtx, it just wasn't enough anymore.

Typical of RA since it is progressive. That is when we started

Humira. To me, Humira and the other biologicals (Enbrel and

Remicade) are not like other drugs. They are a protein and the

counterbalance another protein that is out of control in the bodies

of RA patients. My goal when I knew I had RA was to get on a

biological because they have very few side effects and they can stop

or slow the progession of the RA. See, my mom is completely disabled

from RA because they did not use to have medications that treated it

well. She is horribly disfigured and I never ever want to end up

like that. With the medications available know, my chances of living

a fully functional normal life is not only possible, it's probable.

My rheumy promised me I will never be as bad as my mom is and I'm

holding him to that promise. Oh, he promised my mom that too when

she came to visit. She was at the appt when he " officially "

diagnosed me and he told her flat out, " your daughter will not have

to face what you have had to face. "

One of the reasons I know I will be okay is that I was diagnosed

early and started treatment right away. It is a documented fact that

early treatment of RA with medication is the best way to prevent

joint damage and keep from being disabled later on from this

disease. It can make the difference between RA being managable or

not manageable. But it is also clear that RA is hard to diagnose and

you can't properly treat it if you aren't sure that is what you

have. I am glad your pain is gone for now, and it would be great if

it does stay away. But if not, we are all here for you.

Jennie

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

Hi ,

My name is . I know you addressed your questions to Jennie, so

pardon me for just jumping in here. :-) I just wanted to say I think

you're taking a wise approach to get a second opinion. You don't

want to ignore this, but you don't want to overreact, either.

Methotrexate worked wonderfully for me and I never had any side

effects (I take the tablets, not injections). But I was in a lot of

pain when I started it, so the effects were obvious. If you're not

having active pain, I would be hesitant about starting it, too.

That's not to say I don't think you should take it, but I think it

does warrant a second opinion.

My RA is responding really well to medication and my dr said at my

last appt that he is very hopeful that we'll be able to manage it

successfully. I've already starting cutting back on the Prednisone,

and once that's done, he wants me to see if I can cut back on the

MTX. So all I'm saying is, don't think there are only two choices:

either you don't have RA at all or you get a really severe case. It

is possible to have RA and still lead a pretty normal life. When I

first got this illness, I immediately thought of all the worst-case

scenarios...what if I can't work, what if I can't take care of my

kids, etc. I realize that all these things COULD still happen, but I

also know now that it isn't always that way.

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

Hi ,

My name is . I know you addressed your questions to Jennie, so

pardon me for just jumping in here. :-) I just wanted to say I think

you're taking a wise approach to get a second opinion. You don't

want to ignore this, but you don't want to overreact, either.

Methotrexate worked wonderfully for me and I never had any side

effects (I take the tablets, not injections). But I was in a lot of

pain when I started it, so the effects were obvious. If you're not

having active pain, I would be hesitant about starting it, too.

That's not to say I don't think you should take it, but I think it

does warrant a second opinion.

My RA is responding really well to medication and my dr said at my

last appt that he is very hopeful that we'll be able to manage it

successfully. I've already starting cutting back on the Prednisone,

and once that's done, he wants me to see if I can cut back on the

MTX. So all I'm saying is, don't think there are only two choices:

either you don't have RA at all or you get a really severe case. It

is possible to have RA and still lead a pretty normal life. When I

first got this illness, I immediately thought of all the worst-case

scenarios...what if I can't work, what if I can't take care of my

kids, etc. I realize that all these things COULD still happen, but I

also know now that it isn't always that way.

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

,

I forgot to answer the mtx question. I take pills. 17.5 mgs every

Saturday. But I never had stomach problems before or since. I will

also tell you that my mom took pills and they didn't work. So she

changed to injection and it does work. She stopped mtx when they

came out with Enbrel, but now they know the combination works better

so she's on both again.

You mentioned the other day not wanting to inject yourself. If you

do get a rheumy you trust and this is RA, you can have someone else

inject you. If later on you are prescribed a biological, an

alternative to Enbrel is Remicade. Remicade is not self-injected, it

is an infusion. Some insurances that do not cover self-injectible

drugs do cover Remicade because it is considered a " treatment " as

opposed to a prescription. The Humira I take is self-injectible and

I never thought I would be able to do that. The nurse convinced me

by saying she has 80 year old women who can do it, there is no reason

I should chicken out. Plus I thought, my mom does it and I was lucky

enough to inherit her strength. The rheumy was with me the first

time and I was so shocked the needle didn't hurt at all. It's a very

tiny needle so that is why. Now the medication going in hurt a lot,

but it was over fast. I do it now every other week and I just psych

myself up a little first and I'm fine.

Jennie

>

> You are taking methotrexate right? Tell me how it works for

you?

[Guest guest]

,

I forgot to answer the mtx question. I take pills. 17.5 mgs every

Saturday. But I never had stomach problems before or since. I will

also tell you that my mom took pills and they didn't work. So she

changed to injection and it does work. She stopped mtx when they

came out with Enbrel, but now they know the combination works better

so she's on both again.

You mentioned the other day not wanting to inject yourself. If you

do get a rheumy you trust and this is RA, you can have someone else

inject you. If later on you are prescribed a biological, an

alternative to Enbrel is Remicade. Remicade is not self-injected, it

is an infusion. Some insurances that do not cover self-injectible

drugs do cover Remicade because it is considered a " treatment " as

opposed to a prescription. The Humira I take is self-injectible and

I never thought I would be able to do that. The nurse convinced me

by saying she has 80 year old women who can do it, there is no reason

I should chicken out. Plus I thought, my mom does it and I was lucky

enough to inherit her strength. The rheumy was with me the first

time and I was so shocked the needle didn't hurt at all. It's a very

tiny needle so that is why. Now the medication going in hurt a lot,

but it was over fast. I do it now every other week and I just psych

myself up a little first and I'm fine.

Jennie

>

> You are taking methotrexate right? Tell me how it works for

you?

[Guest guest]

Jennie,

Thanks you! I am beginning to feel much better and not so much like I want to

either scream or run from all of this. I am left with the question of why the

doctor wanted to start these drugs now if I am having no problems. Do you think

he was hoping to get the drugs into my system and working before I started

having problems again?

I would call the nurse, but I know I am really annoying and interrupting her

day. I am sure she has far better things to do than to stay on the phone with

one scatter brained patient.

I guess I should start writing everything down so when I do get to see the

doctor I can ask my questions. Gosh, I hope he has all day! LOL

I am glad that we do have these drugs available. I had no idea what RA was all

about. I figured everyone gets old and gets arthritis. Boy have I learned a

lot!

You are so right. I know no one with RA or really with any serious illness. So

beyond the group there is no one to talk to about this. So I am very greatful

to have this group.

Jennie G <xponder70@...> wrote:

,

You are on the right track, definitely. I think you have done an

amazing job of digesting all this. You will get to the bottom of it,

and there is no need to tell your family if you feel it is best to

wait. You said you have your husband helping you wade through all

this information, and if the two of you can tackle it together for

now, that is wonderful.

RA does not usually run in families. Most people who have it are the

only one's in their family, and often don't even know another soul

with RA. There are families that do have several cases. My mom has

it as does her cousin. My belief based on the research I know of is

that you either have the RA gene or you don't. If you have it, that

does not mean you inherited it or that you will pass it along to the

next generation. So it's a non-hereditary gene. If you have the

gene, that does not mean you will get RA. You need an environmental

trigger. Something like severe illness where your immune system is

very low, or extreme stress, or a combination. They are researching

what causes RA and this is not a scientific fact. But it is what I

believe happens.

I never mind anyone asking me detailed questions. I know you have

read so many posts since you started here, but I'm the one having

some hair loss from the methotrexate. My RA symptoms started nearly

2 years ago. Because I had an elevated RA factor, symptoms similar

to RA and a family history of severe RA, we knew from the start that

is probably what it was. My rheumy was very conservative in

diagnosing me. He did not want to say I had RA and be wrong, even

though he admitted all the evidence pointed toward that.

Like I said I had this swelling and pain bouncing around to various

joints on my body. We tried Bextra and that helped. I was on

samples and the insurance wouldn't approve it, so I switched to

Vioxx. That did not help. Then the insurance approved Bextra but

when I went back on it, it didn't do me any good. We started

prednisone and I tell anyone even if you are going to be on even a

low dose for a short time, up your intake of calcium and be sure to

do weight bearing exercises to help prevent bone loss. I have some

bone loss discovered about 9 months after starting prednisone, and

although I'm 33 and that sucks, it can be controlled and monitored.

And it isn't as bad as being bedridden, which would be the case

without medication.

Eventually the prednisone was not controlling the pain/swelling

enough so that is when I was officially diagnosed and put on mtx.

For a year I had no side effects from the mtx. A couple months ago I

started loosing a little hair (you can't tell on my head even though

I do have thin hair, but I can see from my brush). We upped the dose

of folic acid (prescription strength folic acid helps prevent side

effects of mtx) and I thought it was helping but now I am not sure.

Next rheumy appt I'm going to ask if we can reduce the dose of mtx.

About 6 months after starting mtx, it just wasn't enough anymore.

Typical of RA since it is progressive. That is when we started

Humira. To me, Humira and the other biologicals (Enbrel and

Remicade) are not like other drugs. They are a protein and the

counterbalance another protein that is out of control in the bodies

of RA patients. My goal when I knew I had RA was to get on a

biological because they have very few side effects and they can stop

or slow the progession of the RA. See, my mom is completely disabled

from RA because they did not use to have medications that treated it

well. She is horribly disfigured and I never ever want to end up

like that. With the medications available know, my chances of living

a fully functional normal life is not only possible, it's probable.

My rheumy promised me I will never be as bad as my mom is and I'm

holding him to that promise. Oh, he promised my mom that too when

she came to visit. She was at the appt when he " officially "

diagnosed me and he told her flat out, " your daughter will not have

to face what you have had to face. "

One of the reasons I know I will be okay is that I was diagnosed

early and started treatment right away. It is a documented fact that

early treatment of RA with medication is the best way to prevent

joint damage and keep from being disabled later on from this

disease. It can make the difference between RA being managable or

not manageable. But it is also clear that RA is hard to diagnose and

you can't properly treat it if you aren't sure that is what you

have. I am glad your pain is gone for now, and it would be great if

it does stay away. But if not, we are all here for you.

Jennie

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

Jennie,

Thanks you! I am beginning to feel much better and not so much like I want to

either scream or run from all of this. I am left with the question of why the

doctor wanted to start these drugs now if I am having no problems. Do you think

he was hoping to get the drugs into my system and working before I started

having problems again?

I would call the nurse, but I know I am really annoying and interrupting her

day. I am sure she has far better things to do than to stay on the phone with

one scatter brained patient.

I guess I should start writing everything down so when I do get to see the

doctor I can ask my questions. Gosh, I hope he has all day! LOL

I am glad that we do have these drugs available. I had no idea what RA was all

about. I figured everyone gets old and gets arthritis. Boy have I learned a

lot!

You are so right. I know no one with RA or really with any serious illness. So

beyond the group there is no one to talk to about this. So I am very greatful

to have this group.

Jennie G <xponder70@...> wrote:

,

You are on the right track, definitely. I think you have done an

amazing job of digesting all this. You will get to the bottom of it,

and there is no need to tell your family if you feel it is best to

wait. You said you have your husband helping you wade through all

this information, and if the two of you can tackle it together for

now, that is wonderful.

RA does not usually run in families. Most people who have it are the

only one's in their family, and often don't even know another soul

with RA. There are families that do have several cases. My mom has

it as does her cousin. My belief based on the research I know of is

that you either have the RA gene or you don't. If you have it, that

does not mean you inherited it or that you will pass it along to the

next generation. So it's a non-hereditary gene. If you have the

gene, that does not mean you will get RA. You need an environmental

trigger. Something like severe illness where your immune system is

very low, or extreme stress, or a combination. They are researching

what causes RA and this is not a scientific fact. But it is what I

believe happens.

I never mind anyone asking me detailed questions. I know you have

read so many posts since you started here, but I'm the one having

some hair loss from the methotrexate. My RA symptoms started nearly

2 years ago. Because I had an elevated RA factor, symptoms similar

to RA and a family history of severe RA, we knew from the start that

is probably what it was. My rheumy was very conservative in

diagnosing me. He did not want to say I had RA and be wrong, even

though he admitted all the evidence pointed toward that.

Like I said I had this swelling and pain bouncing around to various

joints on my body. We tried Bextra and that helped. I was on

samples and the insurance wouldn't approve it, so I switched to

Vioxx. That did not help. Then the insurance approved Bextra but

when I went back on it, it didn't do me any good. We started

prednisone and I tell anyone even if you are going to be on even a

low dose for a short time, up your intake of calcium and be sure to

do weight bearing exercises to help prevent bone loss. I have some

bone loss discovered about 9 months after starting prednisone, and

although I'm 33 and that sucks, it can be controlled and monitored.

And it isn't as bad as being bedridden, which would be the case

without medication.

Eventually the prednisone was not controlling the pain/swelling

enough so that is when I was officially diagnosed and put on mtx.

For a year I had no side effects from the mtx. A couple months ago I

started loosing a little hair (you can't tell on my head even though

I do have thin hair, but I can see from my brush). We upped the dose

of folic acid (prescription strength folic acid helps prevent side

effects of mtx) and I thought it was helping but now I am not sure.

Next rheumy appt I'm going to ask if we can reduce the dose of mtx.

About 6 months after starting mtx, it just wasn't enough anymore.

Typical of RA since it is progressive. That is when we started

Humira. To me, Humira and the other biologicals (Enbrel and

Remicade) are not like other drugs. They are a protein and the

counterbalance another protein that is out of control in the bodies

of RA patients. My goal when I knew I had RA was to get on a

biological because they have very few side effects and they can stop

or slow the progession of the RA. See, my mom is completely disabled

from RA because they did not use to have medications that treated it

well. She is horribly disfigured and I never ever want to end up

like that. With the medications available know, my chances of living

a fully functional normal life is not only possible, it's probable.

My rheumy promised me I will never be as bad as my mom is and I'm

holding him to that promise. Oh, he promised my mom that too when

she came to visit. She was at the appt when he " officially "

diagnosed me and he told her flat out, " your daughter will not have

to face what you have had to face. "

One of the reasons I know I will be okay is that I was diagnosed

early and started treatment right away. It is a documented fact that

early treatment of RA with medication is the best way to prevent

joint damage and keep from being disabled later on from this

disease. It can make the difference between RA being managable or

not manageable. But it is also clear that RA is hard to diagnose and

you can't properly treat it if you aren't sure that is what you

have. I am glad your pain is gone for now, and it would be great if

it does stay away. But if not, we are all here for you.

Jennie

> > > I just got off the phone with the nurse. I told her about my

> > > feelings on the diagnosis as well as how I felt about the

> > > medication. She seem upset that I was questioning the doctor

but

> I

> > > think she understood. She did agree with me that a few weeks

> will

> > > not make any difference.

> > >

> > > She explained to me that the doctor likes to try patients on

> drugs

> > to

> > > see if they respond. If they do that just confirms his

> diagnosis.

> > I

> > > told her I prefer not to be an experiment especially since many

> of

> > > these drugs can have serious side effects and consquences. I

> would

> > > prefer to know that I either have RA or not.

> > >

> > > I am going to go try and see another doctor. I called the

> > insurance

> > > company and they are going to see if they can find someone else

> for

> > > me to see. I told them it was for second opinion. They said

it

> > > might be as far as 200 miles away and I many have to wait a

long

> > time

> > > for an appnt.

> > >

> > > She also offered to give me a copy of my tests and papers from

> this

> > > doc to carry to the new one. I thought that was nice of her.

So

> > she

> > > is faxing them.

> > >

> > > So in the end we cancelled the next appnt, put the drugs on

hold

> > and

> > > I have the insurance company hunting down another doc for

second

> > > opinion.

> > >

> > > Thank you all for helping me get though a lot of this.

> > >

> > >

[Guest guest]

Jennie,

So what is the average dose of Methotrexate? Do you just pick a day of the week

to take them? Or do you pick the day that is easiest incase you get sick?

Unless I win a ton of money or change insurance and get better coverage. The

biologicals are out of the question due to cost. My insurance does not cover

them at all. I have info on Enbrel, Humira, Kinert and Remicaide. The doctor

told me this is the best drug treatment available. So I called and checked into

coverage. Sadly I was told NO. Not a covered benefit.

I read that you can go to the drug companies and ask for charity assistance. So

I guess if I really need this in the future this is the way I will have to go.

Though I was told since I have drug coverage they won't help. I will have to

wait and cross that bridge when I get to it.

Jennie G <xponder70@...> wrote:

,

I forgot to answer the mtx question. I take pills. 17.5 mgs every

Saturday. But I never had stomach problems before or since. I will

also tell you that my mom took pills and they didn't work. So she

changed to injection and it does work. She stopped mtx when they

came out with Enbrel, but now they know the combination works better

so she's on both again.

You mentioned the other day not wanting to inject yourself. If you

do get a rheumy you trust and this is RA, you can have someone else

inject you. If later on you are prescribed a biological, an

alternative to Enbrel is Remicade. Remicade is not self-injected, it

is an infusion. Some insurances that do not cover self-injectible

drugs do cover Remicade because it is considered a " treatment " as

opposed to a prescription. The Humira I take is self-injectible and

I never thought I would be able to do that. The nurse convinced me

by saying she has 80 year old women who can do it, there is no reason

I should chicken out. Plus I thought, my mom does it and I was lucky

enough to inherit her strength. The rheumy was with me the first

time and I was so shocked the needle didn't hurt at all. It's a very

tiny needle so that is why. Now the medication going in hurt a lot,

but it was over fast. I do it now every other week and I just psych

myself up a little first and I'm fine.

Jennie

>

> You are taking methotrexate right? Tell me how it works for

you?

[Guest guest]

Jennie,

So what is the average dose of Methotrexate? Do you just pick a day of the week

to take them? Or do you pick the day that is easiest incase you get sick?

Unless I win a ton of money or change insurance and get better coverage. The

biologicals are out of the question due to cost. My insurance does not cover

them at all. I have info on Enbrel, Humira, Kinert and Remicaide. The doctor

told me this is the best drug treatment available. So I called and checked into

coverage. Sadly I was told NO. Not a covered benefit.

I read that you can go to the drug companies and ask for charity assistance. So

I guess if I really need this in the future this is the way I will have to go.

Though I was told since I have drug coverage they won't help. I will have to

wait and cross that bridge when I get to it.

Jennie G <xponder70@...> wrote:

,

I forgot to answer the mtx question. I take pills. 17.5 mgs every

Saturday. But I never had stomach problems before or since. I will

also tell you that my mom took pills and they didn't work. So she

changed to injection and it does work. She stopped mtx when they

came out with Enbrel, but now they know the combination works better

so she's on both again.

You mentioned the other day not wanting to inject yourself. If you

do get a rheumy you trust and this is RA, you can have someone else

inject you. If later on you are prescribed a biological, an

alternative to Enbrel is Remicade. Remicade is not self-injected, it

is an infusion. Some insurances that do not cover self-injectible

drugs do cover Remicade because it is considered a " treatment " as

opposed to a prescription. The Humira I take is self-injectible and

I never thought I would be able to do that. The nurse convinced me

by saying she has 80 year old women who can do it, there is no reason

I should chicken out. Plus I thought, my mom does it and I was lucky

enough to inherit her strength. The rheumy was with me the first

time and I was so shocked the needle didn't hurt at all. It's a very

tiny needle so that is why. Now the medication going in hurt a lot,

but it was over fast. I do it now every other week and I just psych

myself up a little first and I'm fine.

Jennie

>

> You are taking methotrexate right? Tell me how it works for

you?

[Guest guest]

,

Writing everything down is a great idea. Any questions you come up

with, make sure to ask the second rheumy when you see him/her since

none of us are medical professionals!

It is common to confuse osteoarthritis (happens when joints wear down

over time from use) and rheumatoid arthritis (immune disorder that

causes pain and fatigue and joint destruction that can lead to

disability).

I am not sure why your doctor wanted you on all this stuff when you

are symptomless right now. My only suggestion there is to say that

not all rheumy's are created equal. A good one will explain things

to you and answer all your questions. Even then it's a good idea to

compare what you're being told to information you gather on the web

or from here, just to see if there are inconstencies that would cause

you to question the medical advice you've received. I can tell you

my rheumy is always up to date on the latest research and his

treatment advice always makes lots of sense.

The other thought I have is that when you saw the rheumy before,

maybe it was just too much for you to handle at that time. If you

saw him again, you might ask very different questions and that can

lead to better answers.

I know it's scary, but it is a lot less scary when you are well

informed. There are lots of benefits of being part of this group,

and that is a big one.

Jennie

> > > > I just got off the phone with the nurse. I told her about my

> > > > feelings on the diagnosis as well as how I felt about the

> > > > medication. She seem upset that I was questioning the doctor

> but

> > I

> > > > think she understood. She did agree with me that a few weeks

> > will

> > > > not make any difference.

> > > >

> > > > She explained to me that the doctor likes to try patients on

> > drugs

> > > to

> > > > see if they respond. If they do that just confirms his

> > diagnosis.

> > > I

> > > > told her I prefer not to be an experiment especially since

many

> > of

> > > > these drugs can have serious side effects and consquences. I

> > would

> > > > prefer to know that I either have RA or not.

> > > >

> > > > I am going to go try and see another doctor. I called the

> > > insurance

> > > > company and they are going to see if they can find someone

else

> > for

> > > > me to see. I told them it was for second opinion. They said

> it

> > > > might be as far as 200 miles away and I many have to wait a

> long

> > > time

> > > > for an appnt.

> > > >

> > > > She also offered to give me a copy of my tests and papers

from

> > this

> > > > doc to carry to the new one. I thought that was nice of

her.

> So

> > > she

> > > > is faxing them.

> > > >

> > > > So in the end we cancelled the next appnt, put the drugs on

> hold

> > > and

> > > > I have the insurance company hunting down another doc for

> second

> > > > opinion.

> > > >

> > > > Thank you all for helping me get though a lot of this.

> > > >

> > > >

>

>

>

>

[Guest guest]

,

Writing everything down is a great idea. Any questions you come up

with, make sure to ask the second rheumy when you see him/her since

none of us are medical professionals!

It is common to confuse osteoarthritis (happens when joints wear down

over time from use) and rheumatoid arthritis (immune disorder that

causes pain and fatigue and joint destruction that can lead to

disability).

I am not sure why your doctor wanted you on all this stuff when you

are symptomless right now. My only suggestion there is to say that

not all rheumy's are created equal. A good one will explain things

to you and answer all your questions. Even then it's a good idea to

compare what you're being told to information you gather on the web

or from here, just to see if there are inconstencies that would cause

you to question the medical advice you've received. I can tell you

my rheumy is always up to date on the latest research and his

treatment advice always makes lots of sense.

The other thought I have is that when you saw the rheumy before,

maybe it was just too much for you to handle at that time. If you

saw him again, you might ask very different questions and that can

lead to better answers.

I know it's scary, but it is a lot less scary when you are well

informed. There are lots of benefits of being part of this group,

and that is a big one.

Jennie

> > > > I just got off the phone with the nurse. I told her about my

> > > > feelings on the diagnosis as well as how I felt about the

> > > > medication. She seem upset that I was questioning the doctor

> but

> > I

> > > > think she understood. She did agree with me that a few weeks

> > will

> > > > not make any difference.

> > > >

> > > > She explained to me that the doctor likes to try patients on

> > drugs

> > > to

> > > > see if they respond. If they do that just confirms his

> > diagnosis.

> > > I

> > > > told her I prefer not to be an experiment especially since

many

> > of

> > > > these drugs can have serious side effects and consquences. I

> > would

> > > > prefer to know that I either have RA or not.

> > > >

> > > > I am going to go try and see another doctor. I called the

> > > insurance

> > > > company and they are going to see if they can find someone

else

> > for

> > > > me to see. I told them it was for second opinion. They said

> it

> > > > might be as far as 200 miles away and I many have to wait a

> long

> > > time

> > > > for an appnt.

> > > >

> > > > She also offered to give me a copy of my tests and papers

from

> > this

> > > > doc to carry to the new one. I thought that was nice of

her.

> So

> > > she

> > > > is faxing them.

> > > >

> > > > So in the end we cancelled the next appnt, put the drugs on

> hold

> > > and

> > > > I have the insurance company hunting down another doc for

> second

> > > > opinion.

> > > >

> > > > Thank you all for helping me get though a lot of this.

> > > >

> > > >

>

>

>

>

[Guest guest]

,

Methotrexate is given for RA in doses of 25 mgs maximum per week. I

take it on Saturday but honestly, I can't remember why. Either I saw

my rheumy on a Friday or he told me Saturday was easier to remember.

My rheumy insists I take it in the morning because he says it is more

effective that way. Others take it in the evening, but my rheumy's

built enough trust in me that I follow his advice. I think I started

at 12.5 mgs and worked up to 17.5 mgs, and I've been on that dose for

a while (the pills come in 2.5 mgs each). I am weaning off

prednisone and I know we had discussed decreasing the mtx some too

since the Humira is working well (but still staying on mtx, just a

smaller dose).

It's funny because I've always been really bad at remembering to take

medication. But with RA, I will be in pain if I forget and that does

a lot to help me remember. The only time I forget now is when I have

a couple really awesome days or weeks where I feel like my old self,

then sometimes I forget I have RA. Of course, if I miss taking the

medication the RA comes back and slaps me in the face for it.

I have heard great things about the Enbrel and Humira assitance

programs. I think even if you have insurance but they won't pay for

the medication, the program is likely to accept you. I've also heard

of the program working with your insurance get it covered, even if

they've never done so before. The rheumy is the one that I think

gets you into the program. Make sure to tell him/her about your

insurance at your appt so they can give you advice on what to do if

you need meds that are not covered. They run into that all the time

I am sure. You are definitely not alone.

Jennie

> >

> > You are taking methotrexate right? Tell me how it works for

> you?

>

>

>

>

[Guest guest]

,

Methotrexate is given for RA in doses of 25 mgs maximum per week. I

take it on Saturday but honestly, I can't remember why. Either I saw

my rheumy on a Friday or he told me Saturday was easier to remember.

My rheumy insists I take it in the morning because he says it is more

effective that way. Others take it in the evening, but my rheumy's

built enough trust in me that I follow his advice. I think I started

at 12.5 mgs and worked up to 17.5 mgs, and I've been on that dose for

a while (the pills come in 2.5 mgs each). I am weaning off

prednisone and I know we had discussed decreasing the mtx some too

since the Humira is working well (but still staying on mtx, just a

smaller dose).

It's funny because I've always been really bad at remembering to take

medication. But with RA, I will be in pain if I forget and that does

a lot to help me remember. The only time I forget now is when I have

a couple really awesome days or weeks where I feel like my old self,

then sometimes I forget I have RA. Of course, if I miss taking the

medication the RA comes back and slaps me in the face for it.

I have heard great things about the Enbrel and Humira assitance

programs. I think even if you have insurance but they won't pay for

the medication, the program is likely to accept you. I've also heard

of the program working with your insurance get it covered, even if

they've never done so before. The rheumy is the one that I think

gets you into the program. Make sure to tell him/her about your

insurance at your appt so they can give you advice on what to do if

you need meds that are not covered. They run into that all the time

I am sure. You are definitely not alone.

Jennie

> >

> > You are taking methotrexate right? Tell me how it works for

> you?

>

>

>

>

[Guest guest]

My rheumatologist said Monday M=Methotrexate=Monday he said that was a good

way to remember and I thought so too.

Judith

[ ] Re: Took the advice

> ,

>

> Methotrexate is given for RA in doses of 25 mgs maximum per week. I

> take it on Saturday but honestly, I can't remember why. Either I saw

> my rheumy on a Friday or he told me Saturday was easier to remember.

> My rheumy insists I take it in the morning because he says it is more

> effective that way. Others take it in the evening, but my rheumy's

> built enough trust in me that I follow his advice. I think I started

> at 12.5 mgs and worked up to 17.5 mgs, and I've been on that dose for

> a while (the pills come in 2.5 mgs each). I am weaning off

> prednisone and I know we had discussed decreasing the mtx some too

> since the Humira is working well (but still staying on mtx, just a

> smaller dose).

>

> It's funny because I've always been really bad at remembering to take

> medication. But with RA, I will be in pain if I forget and that does

> a lot to help me remember. The only time I forget now is when I have

> a couple really awesome days or weeks where I feel like my old self,

> then sometimes I forget I have RA. Of course, if I miss taking the

> medication the RA comes back and slaps me in the face for it.

>

> I have heard great things about the Enbrel and Humira assitance

> programs. I think even if you have insurance but they won't pay for

> the medication, the program is likely to accept you. I've also heard

> of the program working with your insurance get it covered, even if

> they've never done so before. The rheumy is the one that I think

> gets you into the program. Make sure to tell him/her about your

> insurance at your appt so they can give you advice on what to do if

> you need meds that are not covered. They run into that all the time

> I am sure. You are definitely not alone.

>

> Jennie

>

>

> > >

> > > You are taking methotrexate right? Tell me how it works for

> > you?

> >

> >

> >

> >

[Guest guest]

My rheumatologist said Monday M=Methotrexate=Monday he said that was a good

way to remember and I thought so too.

Judith

[ ] Re: Took the advice

> ,

>

> Methotrexate is given for RA in doses of 25 mgs maximum per week. I

> take it on Saturday but honestly, I can't remember why. Either I saw

> my rheumy on a Friday or he told me Saturday was easier to remember.

> My rheumy insists I take it in the morning because he says it is more

> effective that way. Others take it in the evening, but my rheumy's

> built enough trust in me that I follow his advice. I think I started

> at 12.5 mgs and worked up to 17.5 mgs, and I've been on that dose for

> a while (the pills come in 2.5 mgs each). I am weaning off

> prednisone and I know we had discussed decreasing the mtx some too

> since the Humira is working well (but still staying on mtx, just a

> smaller dose).

>

> It's funny because I've always been really bad at remembering to take

> medication. But with RA, I will be in pain if I forget and that does

> a lot to help me remember. The only time I forget now is when I have

> a couple really awesome days or weeks where I feel like my old self,

> then sometimes I forget I have RA. Of course, if I miss taking the

> medication the RA comes back and slaps me in the face for it.

>

> I have heard great things about the Enbrel and Humira assitance

> programs. I think even if you have insurance but they won't pay for

> the medication, the program is likely to accept you. I've also heard

> of the program working with your insurance get it covered, even if

> they've never done so before. The rheumy is the one that I think

> gets you into the program. Make sure to tell him/her about your

> insurance at your appt so they can give you advice on what to do if

> you need meds that are not covered. They run into that all the time

> I am sure. You are definitely not alone.

>

> Jennie

>

>

> > >

> > > You are taking methotrexate right? Tell me how it works for

> > you?

> >

> >

> >

> >

[Guest guest]

My wife and I have full week pill boxes, from Sunday to Saturday, morning

and night. We refill the containers on Saturday night, and I leave my Sunday

morning pills and the MTX/syringe on the counter. That helps me remember to

take all my meds first thing Sunday morning. It works for me!

Dennis

Re: [ ] Re: Took the advice

> My rheumatologist said Monday M=Methotrexate=Monday he said that was a

good

> way to remember and I thought so too.

>

> Judith

[Guest guest]

My wife and I have full week pill boxes, from Sunday to Saturday, morning

and night. We refill the containers on Saturday night, and I leave my Sunday

morning pills and the MTX/syringe on the counter. That helps me remember to

take all my meds first thing Sunday morning. It works for me!

Dennis

Re: [ ] Re: Took the advice

> My rheumatologist said Monday M=Methotrexate=Monday he said that was a

good

> way to remember and I thought so too.

>

> Judith