Concurrent lupus and rheumatoid arthritis

[Guest guest]

Janine,

Referring to concurrent lupus and rheumatoid arthritis, in the absence

of an overlap syndrome, as uncommon or rare is not equivalent to stating

that it is impossible to have both.

I don't believe it is " absurd " to make readers aware of the facts. We

would be remiss if we didn't provide perspective and information on

diagnostic pitfalls. One can come here to gain an understanding of how

one's diagnosis was made and decide if it makes sense. Armed with

knowledge, one can feel more comfortable discussing a difficult

diagnostic situation with one's physician and seek a second opinion if

necessary.

What about those who come here with a misdiagnosis and have never

thought to question what their physicians have told them? Or didn't have

the facts needed to do so?

Over the years here, for example, a and I have heard many stories of

people who were told, based on the results of a positive ANA alone, and

often a borderline one at that, that they have systemic lupus or SLE in

addition to another disease. So, when we mention or post research on the

diagnostic limitations of the labs or the statistical likelihood of a

certain diagnosis or combination of diagnoses, we aren't voicing

" disbelief " but rather concern. We are urging caution.

Playing the devil's advocate is an easily misunderstood and oftentimes

unpopular role, but the practice can yield healthy discussion and deeper

learning.

Misdiagnoses are very common. The correct diagnosis is essential before

one can obtain the best treatment and monitoring available.

It's great that you are discussing your concerns with your physicians

and that you've investigated the issues related to your unique

circumstances - that's what we're hoping for.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] City / Stacey

>

>

> And perhaps Stacey your doctor is correct. There are some of us who do

have both RA and Lupus. It is never wrong to get a second opinion and

even helpful to hear how different doctors explain the disease(s) as it

affects you. Although you will hear time and time again on this list

how uncommon or even rare it is to have both RA and Lupus, I have found

and have had physicians with a specialty in Rheumatology tell me that it

is in fact possible to have both diseases, partly because today we have

the technology and research to help define the characteristics of both

diseases and that perhaps in years to come we will learn that what was

once thought to be uncommon or rare is not so uncommon or rare afterall.

There are those of us who have both RA and Lupus, who have had very

specific tests and medical workups to determine that both diseases are

present and who do take medications for both diseases including the

anti-TNF biologics.

>

> Speaking only for myself, it was not helpful at all when I was

diagnosed with both diseases to have others tell me how unlikely this

diagnosis was. We already deal with disbelief in an invisible disease

in our day to day lives, to hear it on this list was absurd. It has

taken me 1.5 years to gain the confidence in my own understanding of the

two diseases to speak out today and it is not my intent to start a

controversy - only to say, keep seeing your doctors, keep having tests

run (as pointed out, there are some specific tests that help make

the diagnosis), keep asking questions, keep learning about both

diseases. Find one doctor (for me it was my primary internist) with

whom you can bounce ideas and ask questions about the spcialists that

you will need to see so that together you can build a team of doctors to

treat the various components of these diseases....while being diagnosed

with both may not be that unusual, the treatment is more complex. Do

not hesitate to change doctors until you have a medical team who work

together or learn what you can do to help that team work together - it

might mean you will have to make copies of your labs to give to your

doctors so they are all on the same page with your treatment. I have

learned to keep on my computer a list of all my diagnosis, the doctor

treating that disease, the medication for that disease along with

phone/fax numbers and I take an updated copy to each medical appt and

hand to the nurse for inclusion in my file. These suggestions are

probably good for any disease diagnosis but particularly if you do have

both RA and Lupus or if it is RA and Lupus overlap syndrome. Granted,

if you have both diseases or the overlap syndrome, you will likely find

you will be under careful monitoring and require deligence in doing your

labs - just as those patients who have RA and any of the other

auto-immune diseases.

>

> Janie

>

> ----- Original Message -----

>

> Stacey, perhaps you should consider a second opinion.

>

> As a pointed out a few days ago, getting the correct diagnosis

isn't

> always easy and having both RA and lupus, unless you are talking

about

> an overlap syndrome, is uncommon.

>

> Not only that, but, if it is lupus, Humira (adalimumab) may not be a

> good choice for treatment. Although it is being studied, treatment

of

> lupus with the anti-TNF biologics is controversial. Some researchers

and

> rheumatologists worry that the TNF blockers may exacerbate lupus.

>

> Did any of your physicians do any tests for lupus more specific than

the

> ANA such as anti-Sm or anti-dsDNA?