Carol Es

[Guest guest]

Hello, Carol!

I hope you didn't misunderstand my use of " full-fledged " (what I'm

really driving at is: can both diagnoses stand alone? is it impossible

for all of your symptoms to explained by just one of the two diseases?).

I'm in no way trying to correlate how you are feeling or the seriousness

of your illness with any physician's ability to make an accurate

diagnosis. One can be extremely ill and have no diagnosis, multiple

conflicting diagnoses, or have a very unsatisfying diagnosis such as

mixed connective tissue disease or undifferentiated connective tissue

disease or an overlap syndrome.

What I'm saying is that it is important to determine if it is one or the

other, an overlap syndrome, or truly both in full. Your treatment and

monitoring will be guided by what is thought to be your diagnosis. You

don't want to be in a situation where you are taking inappropriate and

possibly harmful meds long-term or have a complication go unnoticed

because the diagnosis is incorrect.

For example, if one has a high RF, obvious synovitis, joint stiffness

for over an hour every morning, and erosive disease and deformity of

several joints that are commonly affected by RA, AND a positive ANA but

no other signs of lupus such as lupus skin manifestations, other

lupus-specific blood abnormalities (like a positive anti-dsDNA or

anti-Sm), CNS lupus, or lupus kidney disease, then that person most

likely has RA not RA and lupus both. It is very common for doctors to

mistakenly conclude when they see a patient's positive ANA result, even

in the absence of other symptoms or labs specific to lupus and even

thought a positive ANA can occur for many other reasons, that lupus

produced it.

A similar illustration can be made for a patient who has SLE, including

arthritis, but also has a strongly positive RF but no signs of erosive

disease. It is not necessarily true that this person must have SLE and

RA both, they could have SLE alone. Although it's not the norm, erosive

disease can occur in SLE, so care has to be taken to not tack on an RA

diagnosis inappropriately. Bone changes can occur due to other

processes, too.

There are cases where a patient has a variety of troubling symptoms, but

not enough to make a firm diagnosis of either disease - normal labs,

plus one or two lupus-like signs plus some symptoms that seem like RA.

This might be an overlap syndrome.

In your own case, Plaquenil and Medrol are appropriate for both SLE and

RA, but, if you have erosive RA and/or any deformities, you probably

should be on a more aggressive treatment regimen. More effective DMARDs

such as the biologics (Enbrel, Remicade, Kineret) have become very

popular and important in the treatment of RA, but they are not thought

to be appropriate treatment for lupus. Methotrexate is OK for both and

is more effective than Plaquenil. Have they checked your renal function

to see if there are signs of lupus kidney disease? Do you have any

symptoms of CNS lupus?

Have you considered going to a clinic where they specialize in trying to

sort out difficult cases in rheumatology and neurology and come up with

the best diagnosis and treatment plan such as the Mayo Clinic in

Rochester, MN or s Hopkins in Baltimore, MD?

Again, no need to answer any of my questions. And none of this is meant

to make you doubt your current physician.

I'm sorry that you've been suffering so long - from childhood, no less.

I hope you find some relief soon and enjoy our group.

Looking forward to learning more about you,

[ ] Re: i'm new

> thanks for the welcome gina.

>

> i don't mind answering the questions at all.

> i was dxed with ra when i was a kid, about 15 or 16.

> i was dxed with ms in 2000 by a few different neurologists. i didn't

> believe it & went to a few. there was not enough lab evidence, just

> clinical symptoms/history/reflex, etc. i have some kind of

> polyneuropathy. it was supected as ms for a long time, but ruled out

> because my last mris were clear.

> i've had complete work ups with 3 rheumatologsts. the last one was

> the most intense. i've been seeing him for about 6 months & he was

> hesitant to give me any dx because of all my confusing past &

> misdiagnoses. yesterday he told me i have both lupus & ra. he didn't

> talk about " full-fledged " . i have been suffering for many years & i

> do not walk much. any more full-fledged and i would be in the

> wheelchair full time. anyhow, that is a very shortened version of my

> current situation.

>

>

>

> > Hello there, Carol Es! Welcome to our group.

> >

> > Sorry you've had such a difficult time getting the correct

> diagnosis.

> > Just a word of caution: although it's possible, it's unusual to have

> > both full-fledged SLE and RA concurrently - it's usually one or the

> > other. Or did your physician say you have an overlap syndrome? Have

> you

> > seen only one rheumatologist? Who originally diagnosed the MS and

> why

> > was the diagnosis changed? Don't feel as if you have to answer any

> of my

> > nosy questions if you don't feel like it.

> >

> > Try not to worry about the Plaquenil (hydroxychloroquine). It has a

> very

> > good safety profile and is appropriate for both SLE and RA.

> >

> > Some links on Plaquenil (hydroxychloroquine):

> >

> > http://www.rxlist.com/cgi/generic/hquine.htm

> > http://www.rheumatology.org.nz/nz09008.htm

> > http://www.arthritis.co.za/chloroquine.html

> >

> > Combining Plaquenil with corticosteroids is routinely done and

> thought

> > to be safe.

> >

> >