Desperate and need help please

[Guest guest]

In a message dated 4/22/2006 10:08:22 A.M. Eastern Daylight Time,

ktandtm@... writes:

At first they diagnosed me with Lupus. Well I since moved and now

my new rheumy says he isn't convinced that I have lupus. So he

reran my tests and the test he was looking at for lupus came back

negative this time. So I have one test that is positive one

negative. Now he is going to run them again at a new lab and go

with the 2 that agree. He did say that I have RA.

I started off taking 12.5 mg of MTX. Once I got to this doc he

raised the MTX up to 20 mg. It seems like since they raised my dose

my heart has been racing a lot. My anxiety level has went up and

now this week my face and arms felt tiggly a few days after taking

it. I have talked to the doc and he says it is all in my head and

not the MTX. I don't know what to do anymore because I feel like I

am losing my mind and the doc doesn't understand. My pain has

gotten better but I asked if we could lower the dose and see if it

helps. Of course he won't do that. I need some advise from you

all. I just don't know what to do. Should I lower my dose myself?

I have to take it again on Monday and don't know if I want to take

it at all. I am so scared anymore and just don't know where to

turn. This is all so new to me and I don't want to hurt myself by

doing something wrong.

HUGS i'm sorry but i dont know what to say... I personally have

lowered my mtx in the past, but i do NOT recommend it without a doc's ok.

[Guest guest]

In a message dated 4/22/2006 10:38:55 A.M. Eastern Daylight Time,

Matsumura_Clan@... writes:

I'll second that. , find another rheumatologist. MTX could be the cause

of your symptoms.

Lol i third that... what doc wouldn't take that kind of complaint seriously?

geez!

[Guest guest]

At first they diagnosed me with Lupus. Well I since moved and now

my new rheumy says he isn't convinced that I have lupus. So he

reran my tests and the test he was looking at for lupus came back

negative this time. So I have one test that is positive one

negative. Now he is going to run them again at a new lab and go

with the 2 that agree. He did say that I have RA.

I started off taking 12.5 mg of MTX. Once I got to this doc he

raised the MTX up to 20 mg. It seems like since they raised my dose

my heart has been racing a lot. My anxiety level has went up and

now this week my face and arms felt tiggly a few days after taking

it. I have talked to the doc and he says it is all in my head and

not the MTX. I don't know what to do anymore because I feel like I

am losing my mind and the doc doesn't understand. My pain has

gotten better but I asked if we could lower the dose and see if it

helps. Of course he won't do that. I need some advise from you

all. I just don't know what to do. Should I lower my dose myself?

I have to take it again on Monday and don't know if I want to take

it at all. I am so scared anymore and just don't know where to

turn. This is all so new to me and I don't want to hurt myself by

doing something wrong.

Please help.

[Guest guest]

-Hang in there sweetie. I think that w/ Lupus your levels tend to go

back to normal while not flaring. a and and others for that

matter can help you w/ the MTX questions. I am not familiar w/

that. Take care and I am so sorry about all of your anxiety. I know

all about that!!!!!!!!!! It can also make you flare. I usually pace

a lot but w/ all my problems I just end up " kicking my own a** " !!! I

suspect but do not know for a fact that the tingling and racing heart

is probably the stress. Stress can make people feel as if they are

having a heart attack so it can really get ya. Not knowing something

drives me insane and I kinda wonder if that may be contributing to

your stress? I hope that you get answers soon and I am sure someone

will get back to you on the MTX. XXX's take care. Kim-- In RA-

SUPPORT , " ktandtm " <ktandtm@...> wrote:

>

> At first they diagnosed me with Lupus. Well I since moved and now

> my new rheumy says he isn't convinced that I have lupus. So he

> reran my tests and the test he was looking at for lupus came back

> negative this time. So I have one test that is positive one

> negative. Now he is going to run them again at a new lab and go

> with the 2 that agree. He did say that I have RA.

>

> I started off taking 12.5 mg of MTX. Once I got to this doc he

> raised the MTX up to 20 mg. It seems like since they raised my

dose

> my heart has been racing a lot. My anxiety level has went up and

> now this week my face and arms felt tiggly a few days after taking

> it. I have talked to the doc and he says it is all in my head and

> not the MTX. I don't know what to do anymore because I feel like I

> am losing my mind and the doc doesn't understand. My pain has

> gotten better but I asked if we could lower the dose and see if it

> helps. Of course he won't do that. I need some advise from you

> all. I just don't know what to do. Should I lower my dose

myself?

> I have to take it again on Monday and don't know if I want to take

> it at all. I am so scared anymore and just don't know where to

> turn. This is all so new to me and I don't want to hurt myself by

> doing something wrong.

>

> Please help.

>

>

>

[Guest guest]

~

Get a second opinion from a different Doctor or even a third if your

insurance allows it. If we don't trust in the efficacy of our treatment we

have additional stress from fear and confusion. This only makes matters

worse.

If you're confident in your doctor and are just anxious and confused about

the mystery of what's happening and what the cause might be it may help to

take a few deep breaths and say the serenity prayer. Accept the things we

cannot change and change the things we can.

One thing to keep in mind is that many or most of these drugs we're taking

do cause anxiety and other emotional changes.

We owe it to ourselves to seek out a doctor that fits into our situation and

improves it by being part of it. We should never feel we have to suffer to

fit into a Doctors vision of what should be happening. I appreciate Doctors

but feel 0 loyalty to any of them. My loyalty is to myself and those that

depend on me.......

I hope you start feeling better in general and feel better about your

situation~

IAN

[ ] Desperate and need help please

> At first they diagnosed me with Lupus. Well I since moved and now

> my new rheumy says he isn't convinced that I have lupus. So he

> reran my tests and the test he was looking at for lupus came back

> negative this time. So I have one test that is positive one

> negative. Now he is going to run them again at a new lab and go

> with the 2 that agree. He did say that I have RA.

>

> I started off taking 12.5 mg of MTX. Once I got to this doc he

> raised the MTX up to 20 mg. It seems like since they raised my dose

> my heart has been racing a lot. My anxiety level has went up and

> now this week my face and arms felt tiggly a few days after taking

> it. I have talked to the doc and he says it is all in my head and

> not the MTX. I don't know what to do anymore because I feel like I

> am losing my mind and the doc doesn't understand. My pain has

> gotten better but I asked if we could lower the dose and see if it

> helps. Of course he won't do that. I need some advise from you

> all. I just don't know what to do. Should I lower my dose myself?

> I have to take it again on Monday and don't know if I want to take

> it at all. I am so scared anymore and just don't know where to

> turn. This is all so new to me and I don't want to hurt myself by

> doing something wrong.

>

> Please help.

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I had heart fluttering on my highest doses of MTX. I would get a

second opinion--don't think I would trust a doc who wouldn't take

heart complaints seriously.

Sierra

>

> At first they diagnosed me with Lupus. Well I since moved and now

> my new rheumy says he isn't convinced that I have lupus. So he

> reran my tests and the test he was looking at for lupus came back

> negative this time. So I have one test that is positive one

> negative. Now he is going to run them again at a new lab and go

> with the 2 that agree. He did say that I have RA.

>

> I started off taking 12.5 mg of MTX. Once I got to this doc he

> raised the MTX up to 20 mg. It seems like since they raised my

dose

> my heart has been racing a lot. My anxiety level has went up and

> now this week my face and arms felt tiggly a few days after taking

> it. I have talked to the doc and he says it is all in my head and

> not the MTX. I don't know what to do anymore because I feel like I

> am losing my mind and the doc doesn't understand. My pain has

> gotten better but I asked if we could lower the dose and see if it

> helps. Of course he won't do that. I need some advise from you

> all. I just don't know what to do. Should I lower my dose

myself?

> I have to take it again on Monday and don't know if I want to take

> it at all. I am so scared anymore and just don't know where to

> turn. This is all so new to me and I don't want to hurt myself by

> doing something wrong.

>

> Please help.

>

>

>

[Guest guest]

I'll second that. , find another rheumatologist. MTX could be the cause

of your symptoms.

Are you taking folic acid, too? If so, how much?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: Desperate and need help please

>I had heart fluttering on my highest doses of MTX. I would get a

> second opinion--don't think I would trust a doc who wouldn't take

> heart complaints seriously.

>

> Sierra

>

>

>>

>> At first they diagnosed me with Lupus. Well I since moved and now

>> my new rheumy says he isn't convinced that I have lupus. So he

>> reran my tests and the test he was looking at for lupus came back

>> negative this time. So I have one test that is positive one

>> negative. Now he is going to run them again at a new lab and go

>> with the 2 that agree. He did say that I have RA.

>>

>> I started off taking 12.5 mg of MTX. Once I got to this doc he

>> raised the MTX up to 20 mg. It seems like since they raised my

> dose

>> my heart has been racing a lot. My anxiety level has went up and

>> now this week my face and arms felt tiggly a few days after taking

>> it. I have talked to the doc and he says it is all in my head and

>> not the MTX. I don't know what to do anymore because I feel like I

>> am losing my mind and the doc doesn't understand. My pain has

>> gotten better but I asked if we could lower the dose and see if it

>> helps. Of course he won't do that. I need some advise from you

>> all. I just don't know what to do. Should I lower my dose

> myself?

>> I have to take it again on Monday and don't know if I want to take

>> it at all. I am so scared anymore and just don't know where to

>> turn. This is all so new to me and I don't want to hurt myself by

>> doing something wrong.

>>

>> Please help.

>>

>>

>>

>

>

>

>

>

>

>

[Guest guest]

Thank you all so much for replying so fast. I have felt like I am

losing my mind and knowone will listen. When I took 12.5 mg of MTX

I didn't have these problems but when I went up to the 20 mg dose it

all started. I take 1 mg in the morning and 1 mg at night of the

folic acid. I don't know what to do about the MTX. I am afraid to

take the 20 mg dose on Monday if it is making my heart race. I

won't be able to get in for a second opinion very fast though. What

do you all think I should do? I am considering just taking 12.5 mg

instead. I don't want to tick the doctor off but I guess he won't

know if I don't tell him. What do you all think?

> >>

> >> At first they diagnosed me with Lupus. Well I since moved and

now

> >> my new rheumy says he isn't convinced that I have lupus. So he

> >> reran my tests and the test he was looking at for lupus came

back

> >> negative this time. So I have one test that is positive one

> >> negative. Now he is going to run them again at a new lab and go

> >> with the 2 that agree. He did say that I have RA.

> >>

> >> I started off taking 12.5 mg of MTX. Once I got to this doc he

> >> raised the MTX up to 20 mg. It seems like since they raised my

> > dose

> >> my heart has been racing a lot. My anxiety level has went up

and

> >> now this week my face and arms felt tiggly a few days after

taking

> >> it. I have talked to the doc and he says it is all in my head

and

> >> not the MTX. I don't know what to do anymore because I feel

like I

> >> am losing my mind and the doc doesn't understand. My pain has

> >> gotten better but I asked if we could lower the dose and see if

it

> >> helps. Of course he won't do that. I need some advise from you

> >> all. I just don't know what to do. Should I lower my dose

> > myself?

> >> I have to take it again on Monday and don't know if I want to

take

> >> it at all. I am so scared anymore and just don't know where to

> >> turn. This is all so new to me and I don't want to hurt myself

by

> >> doing something wrong.

> >>

> >> Please help.

> >>

> >>

> >>

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you Ian. I have been praying more than you know the last few

weeks. I am anxious about being diagnosed. However, I know when

something doesn't feel right in my body and this just doesn't feel

right. I am so tired of my husband and everyone else chalking me up

as going crazy. I am starting to go crazy but I think it is because

of these meds. I mean when your heart is always going fast it

drives you nuts. You can't get the anxiety down! This didn't start

until they went up on the MTX. My RA symptoms are better but this

is driving my insane. I think the stress is starting to make my

symptoms worse again. I just know stress is worse than anything.

>

> ~

>

> Get a second opinion from a different Doctor or even a third if

your

> insurance allows it. If we don't trust in the efficacy of our

treatment we

> have additional stress from fear and confusion. This only makes

matters

> worse.

> If you're confident in your doctor and are just anxious and

confused about

> the mystery of what's happening and what the cause might be it may

help to

> take a few deep breaths and say the serenity prayer. Accept the

things we

> cannot change and change the things we can.

> One thing to keep in mind is that many or most of these drugs

we're taking

> do cause anxiety and other emotional changes.

> We owe it to ourselves to seek out a doctor that fits into our

situation and

> improves it by being part of it. We should never feel we have to

suffer to

> fit into a Doctors vision of what should be happening. I

appreciate Doctors

> but feel 0 loyalty to any of them. My loyalty is to myself and

those that

> depend on me.......

>

> I hope you start feeling better in general and feel better about

your

> situation~

>

> IAN

>

>

>

>

>

>

> [ ] Desperate and need help please

>

>

> > At first they diagnosed me with Lupus. Well I since moved and

now

> > my new rheumy says he isn't convinced that I have lupus. So he

> > reran my tests and the test he was looking at for lupus came back

> > negative this time. So I have one test that is positive one

> > negative. Now he is going to run them again at a new lab and go

> > with the 2 that agree. He did say that I have RA.

> >

> > I started off taking 12.5 mg of MTX. Once I got to this doc he

> > raised the MTX up to 20 mg. It seems like since they raised my

dose

> > my heart has been racing a lot. My anxiety level has went up and

> > now this week my face and arms felt tiggly a few days after

taking

> > it. I have talked to the doc and he says it is all in my head

and

> > not the MTX. I don't know what to do anymore because I feel

like I

> > am losing my mind and the doc doesn't understand. My pain has

> > gotten better but I asked if we could lower the dose and see if

it

> > helps. Of course he won't do that. I need some advise from you

> > all. I just don't know what to do. Should I lower my dose

myself?

> > I have to take it again on Monday and don't know if I want to

take

> > it at all. I am so scared anymore and just don't know where to

> > turn. This is all so new to me and I don't want to hurt myself

by

> > doing something wrong.

> >

> > Please help.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I'm not recommending anything to you, but I have personally adjusted

my dose(downward) a number of times without talking to my doctor in

advance. I always trust my gut feeling.

Sierra

> > >>

> > >> At first they diagnosed me with Lupus. Well I since moved and

> now

> > >> my new rheumy says he isn't convinced that I have lupus. So he

> > >> reran my tests and the test he was looking at for lupus came

> back

> > >> negative this time. So I have one test that is positive one

> > >> negative. Now he is going to run them again at a new lab and

go

> > >> with the 2 that agree. He did say that I have RA.

> > >>

> > >> I started off taking 12.5 mg of MTX. Once I got to this doc he

> > >> raised the MTX up to 20 mg. It seems like since they raised my

> > > dose

> > >> my heart has been racing a lot. My anxiety level has went up

> and

> > >> now this week my face and arms felt tiggly a few days after

> taking

> > >> it. I have talked to the doc and he says it is all in my head

> and

> > >> not the MTX. I don't know what to do anymore because I feel

> like I

> > >> am losing my mind and the doc doesn't understand. My pain has

> > >> gotten better but I asked if we could lower the dose and see

if

> it

> > >> helps. Of course he won't do that. I need some advise from

you

> > >> all. I just don't know what to do. Should I lower my dose

> > > myself?

> > >> I have to take it again on Monday and don't know if I want to

> take

> > >> it at all. I am so scared anymore and just don't know where to

> > >> turn. This is all so new to me and I don't want to hurt

myself

> by

> > >> doing something wrong.

> > >>

> > >> Please help.

> > >>

> > >>

> > >>

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi :

Well, your doctor sounds like a bit of a jerk for not

listening to you when you are telling him what the Mtx

could be possibly causing - and I do think that it is

probably the Mtx doing the heart racing stuff. I

would think that reducing the dose is the way to go,

but don't do anything without telling him about it.

Going from 12.5 up to 20 without any in between doses

seems a bit extreme for me. They should have raised

it more slowly to see what it did to you. Tell him

you want to go down to 15, that's a compromise dose,

and maybe it won't affect you as badly at that dose.

Are you taking your Folic Acid too?

Kathe in CA

--- ktandtm <ktandtm@...> wrote:

> At first they diagnosed me with Lupus. Well I since

> moved and now

> my new rheumy says he isn't convinced that I have

> lupus. So he

> reran my tests and the test he was looking at for

> lupus came back

> negative this time. So I have one test that is

> positive one

> negative. Now he is going to run them again at a

> new lab and go

> with the 2 that agree. He did say that I have RA.

>

> I started off taking 12.5 mg of MTX. Once I got to

> this doc he

> raised the MTX up to 20 mg. It seems like since

> they raised my dose

> my heart has been racing a lot. My anxiety level

> has went up and

> now this week my face and arms felt tiggly a few

> days after taking

> it. I have talked to the doc and he says it is all

> in my head and

> not the MTX. I don't know what to do anymore

> because I feel like I

> am losing my mind and the doc doesn't understand.

> My pain has

> gotten better but I asked if we could lower the dose

> and see if it

> helps. Of course he won't do that. I need some

> advise from you

> all. I just don't know what to do. Should I lower

> my dose myself?

> I have to take it again on Monday and don't know if

> I want to take

> it at all. I am so scared anymore and just don't

> know where to

> turn. This is all so new to me and I don't want to

> hurt myself by

> doing something wrong.

>

> Please help.

>

>

>

>

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Yes I am taking the folic acid.

>

> > At first they diagnosed me with Lupus. Well I since

> > moved and now

> > my new rheumy says he isn't convinced that I have

> > lupus. So he

> > reran my tests and the test he was looking at for

> > lupus came back

> > negative this time. So I have one test that is

> > positive one

> > negative. Now he is going to run them again at a

> > new lab and go

> > with the 2 that agree. He did say that I have RA.

> >

> > I started off taking 12.5 mg of MTX. Once I got to

> > this doc he

> > raised the MTX up to 20 mg. It seems like since

> > they raised my dose

> > my heart has been racing a lot. My anxiety level

> > has went up and

> > now this week my face and arms felt tiggly a few

> > days after taking

> > it. I have talked to the doc and he says it is all

> > in my head and

> > not the MTX. I don't know what to do anymore

> > because I feel like I

> > am losing my mind and the doc doesn't understand.

> > My pain has

> > gotten better but I asked if we could lower the dose

> > and see if it

> > helps. Of course he won't do that. I need some

> > advise from you

> > all. I just don't know what to do. Should I lower

> > my dose myself?

> > I have to take it again on Monday and don't know if

> > I want to take

> > it at all. I am so scared anymore and just don't

> > know where to

> > turn. This is all so new to me and I don't want to

> > hurt myself by

> > doing something wrong.

> >

> > Please help.

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>