Is it RA, or is it Lupus?

[Guest guest]

I am looking for a little support, guidance, understanding.... I am

31 y/o and started having significant pain in all of the joints of my

hands, wrists, feet, and ankles about three months ago. I also

suffer from overwhelming fatigue, which seems to be exacerbated if I

actually try to do something during my day. I have been seeing a

Rheumatologist who has been flipping back and forth between Lupus and

RA as possible diagnoses. I have elevated ANA, but most of the other

tests he ran that would be indicative of lupus were negative. I have

no skin rash, no sun irritation, no " butterly " rash on my face. Only

joint pain and fatigue. I am taking Plaquinil, Celebrex, Predisone,

Metheltrexate, and Folic Acid. My Prednisone dose gets increased

every 2-3 weeks as the initial relief I feel (with much hope and

excitement) begins to fade and the pain and fatigue return. My RF is

negative, my sed rate is normal and my CRP is normal (can those be

affected by the Prednisone?). You start to feel like your losing

your mind. You feel like people start to think you're exaggerating,

have a low pain threshold, or maybe its just a figment of your

imagination. My husband is very loving, very understanding (to the

best of his ability) but can't truly understand the frustrations that

I am feeling right now. I am looking for somebody who has been where

I am now, some words of wisdom, some true understanding...please

[Guest guest]

, I'm sorry that you are experiencing such fatigue, pain, and

frustration.

Did your rheumatologist order any x-rays or MRIs of your hands and

feet? Have you had an anti-CCP test (more specific for RA than RF)?

In addition to the pain in your joints, is there swelling?

A second opinion can't hurt. Getting an accurate diagnosis in the

early stages of rheumatic disease is often difficult.

Not an MD

On Fri, Aug 15, 2008 at 5:40 PM, Lemke (Vanderpool)

<newlemke@...> wrote:

> I am looking for a little support, guidance, understanding.... I am

> 31 y/o and started having significant pain in all of the joints of my

> hands, wrists, feet, and ankles about three months ago. I also

> suffer from overwhelming fatigue, which seems to be exacerbated if I

> actually try to do something during my day. I have been seeing a

> Rheumatologist who has been flipping back and forth between Lupus and

> RA as possible diagnoses. I have elevated ANA, but most of the other

> tests he ran that would be indicative of lupus were negative. I have

> no skin rash, no sun irritation, no " butterly " rash on my face. Only

> joint pain and fatigue. I am taking Plaquinil, Celebrex, Predisone,

> Metheltrexate, and Folic Acid. My Prednisone dose gets increased

> every 2-3 weeks as the initial relief I feel (with much hope and

> excitement) begins to fade and the pain and fatigue return. My RF is

> negative, my sed rate is normal and my CRP is normal (can those be

> affected by the Prednisone?). You start to feel like your losing

> your mind. You feel like people start to think you're exaggerating,

> have a low pain threshold, or maybe its just a figment of your

> imagination. My husband is very loving, very understanding (to the

> best of his ability) but can't truly understand the frustrations that

> I am feeling right now. I am looking for somebody who has been where

> I am now, some words of wisdom, some true understanding...please

[Guest guest]

,

I wish that I could tell you what is going on with you. I have not

walked in your shoes. It is good that you are seeing a

rheumatologist. Not knowing is scarry and just like you said, how

serious do people take your pain?

I know that you are not exaggerating. Your description sounds like

so many of us.

I hope he gives you a dx soon and hopefull someone here has more

insight than I do. Anytime you feel that you need to reach out, that

is what this group is for. Sorry that I am not helpful but I did

want you to know that I care.

Shirley

>

> I am looking for a little support, guidance, understanding.... I

am

> 31 y/o and started having significant pain in all of the joints of

my

> hands, wrists, feet, and ankles about three months ago. I also

> suffer from overwhelming fatigue, which seems to be exacerbated if

I

> actually try to do something during my day. I have been seeing a

> Rheumatologist who has been flipping back and forth between Lupus

and

> RA as possible diagnoses. I have elevated ANA, but most of the

other

> tests he ran that would be indicative of lupus were negative. I

have

> no skin rash, no sun irritation, no " butterly " rash on my face.

Only

> joint pain and fatigue. I am taking Plaquinil, Celebrex,

Predisone,

> Metheltrexate, and Folic Acid. My Prednisone dose gets increased

> every 2-3 weeks as the initial relief I feel (with much hope and

> excitement) begins to fade and the pain and fatigue return. My RF

is

> negative, my sed rate is normal and my CRP is normal (can those be

> affected by the Prednisone?). You start to feel like your losing

> your mind. You feel like people start to think you're

exaggerating,

> have a low pain threshold, or maybe its just a figment of your

> imagination. My husband is very loving, very understanding (to

the

> best of his ability) but can't truly understand the frustrations

that

> I am feeling right now. I am looking for somebody who has been

where

> I am now, some words of wisdom, some true understanding...please

>

[Guest guest]

,

Thank you for your quick response. I am feeling particularly frustrated

today. He did get x-rays and MRIs of my hands and feet, which were normal. As

far as swelling in my hands and feet, not significant, other than I did have to

go up a shoe size to accomadate extra width. It is partly because of swelling,

but also because of the extreme tenderness in my toe joints, which I also have

in my knuckle joints of my hands. I don't even like to let my husband hold my

hand. As far as teh anti-CCP, they just drew the blood for that today so I

won't know for about a week what that says. I have thought about another

opinion, but I am seeing Dr. Louie at UCLA Medical Center in LA, its hard

to know where to go from there. I'm sure he knows what he is doing, but when

you only see him once a month I sometimes wonder if he even remembers me at all.

Maybe I'm just used to the " small town medicine " we have here at home.

<Rheumatoid.Arthritis.Support@...> wrote:

, I'm sorry that you are experiencing such fatigue, pain, and

frustration.

Did your rheumatologist order any x-rays or MRIs of your hands and

feet? Have you had an anti-CCP test (more specific for RA than RF)?

In addition to the pain in your joints, is there swelling?

A second opinion can't hurt. Getting an accurate diagnosis in the

early stages of rheumatic disease is often difficult.

Not an MD

On Fri, Aug 15, 2008 at 5:40 PM, Lemke (Vanderpool)

<newlemke@...> wrote:

> I am looking for a little support, guidance, understanding.... I am

> 31 y/o and started having significant pain in all of the joints of my

> hands, wrists, feet, and ankles about three months ago. I also

> suffer from overwhelming fatigue, which seems to be exacerbated if I

> actually try to do something during my day. I have been seeing a

> Rheumatologist who has been flipping back and forth between Lupus and

> RA as possible diagnoses. I have elevated ANA, but most of the other

> tests he ran that would be indicative of lupus were negative. I have

> no skin rash, no sun irritation, no " butterly " rash on my face. Only

> joint pain and fatigue. I am taking Plaquinil, Celebrex, Predisone,

> Metheltrexate, and Folic Acid. My Prednisone dose gets increased

> every 2-3 weeks as the initial relief I feel (with much hope and

> excitement) begins to fade and the pain and fatigue return. My RF is

> negative, my sed rate is normal and my CRP is normal (can those be

> affected by the Prednisone?). You start to feel like your losing

> your mind. You feel like people start to think you're exaggerating,

> have a low pain threshold, or maybe its just a figment of your

> imagination. My husband is very loving, very understanding (to the

> best of his ability) but can't truly understand the frustrations that

> I am feeling right now. I am looking for somebody who has been where

> I am now, some words of wisdom, some true understanding...please

[Guest guest]

Shirley,

Thank you so much for your caring. I know that I will have an answer

eventually, patience is a virtue I guess. I appreciate that I have found a

forum where I can discuss my frustrations and people might actually understand

what I'm going through. I go see my rheumatologist on the 26th and I will be

sure to post a follow-up message.

Thanks

nana2livi <s.p5315@...> wrote:

,

I wish that I could tell you what is going on with you. I have not

walked in your shoes. It is good that you are seeing a

rheumatologist. Not knowing is scarry and just like you said, how

serious do people take your pain?

I know that you are not exaggerating. Your description sounds like

so many of us.

I hope he gives you a dx soon and hopefull someone here has more

insight than I do. Anytime you feel that you need to reach out, that

is what this group is for. Sorry that I am not helpful but I did

want you to know that I care.

Shirley

>

> I am looking for a little support, guidance, understanding.... I

am

> 31 y/o and started having significant pain in all of the joints of

my

> hands, wrists, feet, and ankles about three months ago. I also

> suffer from overwhelming fatigue, which seems to be exacerbated if

I

> actually try to do something during my day. I have been seeing a

> Rheumatologist who has been flipping back and forth between Lupus

and

> RA as possible diagnoses. I have elevated ANA, but most of the

other

> tests he ran that would be indicative of lupus were negative. I

have

> no skin rash, no sun irritation, no " butterly " rash on my face.

Only

> joint pain and fatigue. I am taking Plaquinil, Celebrex,

Predisone,

> Metheltrexate, and Folic Acid. My Prednisone dose gets increased

> every 2-3 weeks as the initial relief I feel (with much hope and

> excitement) begins to fade and the pain and fatigue return. My RF

is

> negative, my sed rate is normal and my CRP is normal (can those be

> affected by the Prednisone?). You start to feel like your losing

> your mind. You feel like people start to think you're

exaggerating,

> have a low pain threshold, or maybe its just a figment of your

> imagination. My husband is very loving, very understanding (to

the

> best of his ability) but can't truly understand the frustrations

that

> I am feeling right now. I am looking for somebody who has been

where

> I am now, some words of wisdom, some true understanding...please

>

[Guest guest]

,

If you want to know if it's lupus, you can try one of the best

lupologists in the country, J Wallace:

http://www.danieljwallace.com

He has an office in LA.

Not an MD

On Fri, Aug 15, 2008 at 6:19 PM, Lemke <newlemke@...> wrote:

> ,

> Thank you for your quick response. I am feeling particularly frustrated

> today. He did get x-rays and MRIs of my hands and feet, which were normal.

> As far as swelling in my hands and feet, not significant, other than I did

> have to go up a shoe size to accomadate extra width. It is partly because of

> swelling, but also because of the extreme tenderness in my toe joints, which

> I also have in my knuckle joints of my hands. I don't even like to let my

> husband hold my hand. As far as teh anti-CCP, they just drew the blood for

> that today so I won't know for about a week what that says. I have thought

> about another opinion, but I am seeing Dr. Louie at UCLA Medical

> Center in LA, its hard to know where to go from there. I'm sure he knows

> what he is doing, but when you only see him once a month I sometimes wonder

> if he even remembers me at all. Maybe I'm just used to the " small town

> medicine " we have here at home.

[Guest guest]

Hi ,

Oh dear ,so sorry. Yes, feel for you. Sounds as though you are in

that awful limbo,the time span of coming to grips with having landed

a painful and nonspecifically illmaking condition with the hallmark

of profound unexplained fatigue and weariness, that so many of this

group go through and recognise.Do you have fever too? The frustration

of not being able to put a name to this unwelcome intruder in your

life that is not visible externally, and the feeling that people

might take you for a fraud!

But do believe in your self, you are not losing your mind, hope you

find comfort here.

From your description you can at least for sure call your

illness " an autoimmune inflammatory arthropathy/arthritis (steroid

responsive,awaiting precise classification) " Call it that for now!

Can see why your doc is leaning to lupus, but also sero-neg RA and

there are overlap conditions.The main thing for good outcome is that

you are started on active meds early, so that is good.

My sister developed lupus (given diagnosis on her 30 th birthday)and

is now vey well,working and very active in her late 50's.

Best wishes,

retired doc, UK

> >

> > I am looking for a little support, guidance, understanding.... I

> am

> > 31 y/o and started having significant pain in all of the joints

of

> my

> > hands, wrists, feet, and ankles about three months ago. I also

> > suffer from overwhelming fatigue, which seems to be exacerbated

if

> I

> > actually try to do something during my day. I have been seeing a

> > Rheumatologist who has been flipping back and forth between Lupus

> and

> > RA as possible diagnoses. I have elevated ANA, but most of the

> other

> > tests he ran that would be indicative of lupus were negative. I

> have

> > no skin rash, no sun irritation, no " butterly " rash on my face.

> Only

> > joint pain and fatigue. I am taking Plaquinil, Celebrex,

> Predisone,

> > Metheltrexate, and Folic Acid. My Prednisone dose gets increased

> > every 2-3 weeks as the initial relief I feel (with much hope and

> > excitement) begins to fade and the pain and fatigue return. My RF

> is

> > negative, my sed rate is normal and my CRP is normal (can those

be

> > affected by the Prednisone?). You start to feel like your losing

> > your mind. You feel like people start to think you're

> exaggerating,

> > have a low pain threshold, or maybe its just a figment of your

> > imagination. My husband is very loving, very understanding (to

> the

> > best of his ability) but can't truly understand the frustrations

> that

> > I am feeling right now. I am looking for somebody who has been

> where

> > I am now, some words of wisdom, some true understanding...please

> >

>

>

>

>

>

>

>