Another Diagnosis

[Guest guest]

I came out of lurking the other day to ask about Humira injections and this

great group gave me several good answers. Well now another diagnosis.....the

results of my latest lab tests are in, although we had suspected it for months,

it is now positive that I also have Lupus. Well that immediately ends my

injectables for the RA so I guess I don't have to worry about the stinging

injections anymore. So now I add Lupus to the mix of RA, Fibromyalgia,

Raynaud's, Sjogren's.....well, so many of you know the list. I am sort of

bummed out right now. I have contacted the Lupus Foundation for info on

support groups in my area......anyone have a good one to recommend in the

Oklahoma City area???

Janie in OK

[Guest guest]

Janie in OK,

I hope you don't mind me writing you privately. I am sorry about

your diagnose of Lupus, I know it's tough right now, hang in there.

I was wanting to ask you something about the Humira and Lupus. If

you have Lupus, you can't take Humira? Because I was diagnosed with

Lupus also, but I'm on the Humira. Keep me informed what is going on

dear, I am concerned for you, hugs Tawny

> I came out of lurking the other day to ask about Humira injections

and this great group gave me several good answers. Well now another

diagnosis.....the results of my latest lab tests are in, although we

had suspected it for months, it is now positive that I also have

Lupus. Well that immediately ends my injectables for the RA so I

guess I don't have to worry about the stinging injections anymore. So

now I add Lupus to the mix of RA, Fibromyalgia, Raynaud's,

Sjogren's.....well, so many of you know the list. I am sort of

bummed out right now. I have contacted the Lupus Foundation for

info on support groups in my area......anyone have a good one to

recommend in the Oklahoma City area???

>

> Janie in OK

>

>

[Guest guest]

Janie, I sent you a private email, I hope you don't mind. I'm so

sorry for your diagnose of Lupus, I will keep you in my prayers. I

have been diagnosed with Lupus also, but I take Humira, and that is

what I wrote to you privately. You take care of yourself, Tawny

> I came out of lurking the other day to ask about Humira injections

and this great group gave me several good answers. Well now another

diagnosis.....the results of my latest lab tests are in, although we

had suspected it for months, it is now positive that I also have

Lupus. Well that immediately ends my injectables for the RA so I

guess I don't have to worry about the stinging injections anymore. So

now I add Lupus to the mix of RA, Fibromyalgia, Raynaud's,

Sjogren's.....well, so many of you know the list. I am sort of

bummed out right now. I have contacted the Lupus Foundation for

info on support groups in my area......anyone have a good one to

recommend in the Oklahoma City area???

>

> Janie in OK

>

>

[Guest guest]

Janie, there are a couple of important facts you should know before you

conclude that you have lupus in addition to your RA.

1) In the absence of an overlap syndrome, the occurrence of RA and lupus

in a single individual is rare.

2) ANA positivity is common in RA patients - easily 30% of RA patients

are ANA positive. A diagnosis of lupus cannot be based on ANA positivity

alone. Many non-lupus conditions and diseases are associated with ANA

positivity.

3) Certain drugs, most notably in your case the TNF blockers (you were

on Enbrel and you are now on Humira), cause what is known as

" drug-induced lupus. " This is when labs and sometimes clinical signs and

symptoms of lupus appear because of a certain medication. Most often,

the

labs return to normal and the symptoms disappear after the offending

drug is discontinued. Serious clinical developments (like lupus kidney

disease) are rare in drug-induced lupus. As you see from the article

below, although many people on anti-TNF therapies develop antibodies

associated with lupus, few develop clinical lupus.

" Anti-TNF therapy represents a significant advance in the treatment of

rheumatoid arthritis. It has also become apparent that patients

receiving either anti-TNF monoclonal antibodies or TNF receptor

antagonists can develop serological evidence of autoimmunity (11). In

one study, new ANA and anti-dsDNA antibodies were found in 33% and 9% of

infliximab recipients, respectively. However, there is clear

discordance between the development of autoantibodies and clinical

autoimmunity, with less than 20 symptomatic patients reported in the

literature and in abstract form. "

Bulletin on the Rheumatic Diseases

Volume 51 Number 4

Drug-induced Lupus (DIL)

http://www.arthritis.org/research/bulletin/vol51no4/51_4_Drug-induced.asp

Besides a positive ANA, what is leading your physician to say that you

have lupus, too?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Another Diagnosis

> I came out of lurking the other day to ask about Humira injections and

this great group gave me several good answers. Well now another

diagnosis.....the results of my latest lab tests are in, although we had

suspected it for months, it is now positive that I also have Lupus.

Well that immediately ends my injectables for the RA so I guess I don't

have to worry about the stinging injections anymore. So now I add Lupus

to the mix of RA, Fibromyalgia, Raynaud's, Sjogren's.....well, so many

of you know the list. I am sort of bummed out right now. I have

contacted the Lupus Foundation for info on support groups in my

area......anyone have a good one to recommend in the Oklahoma City

area???

>

> Janie in OK

[Guest guest]

Janie,

I'm not trying to single you (or your doctor) out or put you on the

spot. For the sake of discussion, I often ask questions about or comment

on the mention of RA and SLE diagnosed in the same person. Over the

years here, we have had many more members told that they have both RA

and lupus than statistically likely .

I suspect, too, that, with the use of Remicade, Enbrel, and Humira

becoming so common, the topic will come up even more often.

Back to your case: If you were ANA-positive even before you used Enbrel,

that alone shouldn't necessarily raise suspicion of lupus since ANA

positivity is not specific to lupus.

Now anti-dsDNA and anti-Sm are very specific to lupus, BUT they can be

induced by the use of the anti-TNF biologics. In fact, though they

tested negative for antibodies associated with lupus before they began

therapy, people using Remicade, Enbrel, and Humira have been documented

as producing the following antibodies: ANA, anti-dsDNA, anti-Sm,

anticardiolipin, antihistone, anti-RNP, anti-SSA(Ro) and anti-SSB (La).

This is not a complete list. Interestingly, in this anti-TNF scenario,

the antibodies usually develop without producing any significant

clinical manifestations.

Apart from the antibodies, if you had and still have clinical signs and

symptoms of lupus and you had them before the use of either of the

biologics, that would be more meaningful (and maybe you did/do - I don't

know). Or if you had a high titer anti-dsDNA and/or anti-Sm prior to

using Enbrel or Humira, it would be easier to discount drug-induced

lupus at this point.

If there is still strong evidence that indicates lupus regardless of

your use of Enbrel and Humira, perhaps another question to consider

would be whether it's really RA, too. What symptoms, signs, or labs do

you have that could be explained by RA but not lupus?

There's no need to answer any of these questions, of course. I pose them

just as food for thought. We have so many people reading that I don't

want them to be under the mistaken impression that the coexistence of RA

and SLE is common, especially since the treatment and monitoring for the

diseases are very different. Also important for people to understand is

that lupus and drug-induced lupus are very different animals.

Many of the sources I know and trust do indeed describe a dual diagnosis

of RA and SLE as " rare, " but I will accept " unusual " too, LOL!

Sorry that your lupus diagnosis is upsetting to you. I hope you and your

doctor can come up with a treatment program that you can tolerate and

that will be effective.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Another Diagnosis

> ,

>

> As much as I would like to believe the diognosis of Lupus might be a

misdiagnosis, there are several facts that stand. The ANA's although

low had started showing positive before I began Enbrel, so I started

injectables knowing that we were suspicious and that I would be

immediately taken off the injections if my very conservative Rheumy

determined it was Lupus. (Not only was my Rheumy suspicious of Lupus but

also my Internist.) Add to that the disease history, family history,

continued ANA's, and positives on a group of tests including Anti-DNA,

Anti-RNP/SM/SSA/SSB, etc pretty much proved itself (I expect the

positives on the DNA and SM was the clincher.) I know that this

Rheumatologist would not give me a " positive diagnosis of Lupus " were he

not certain. In fact, a less conservative doctor may have jumped to

this conclusion much sooner and perhaps without allowing the proper

criterion to play itself out and then the lab tests to back up the

decision. We have been working toward ruling this diagnosis in or out

for over a year....and one would think that you would be prepared for

such a diagnosis given that much time, but I will share that this is the

one diagnosis that really has rocked me.

>

> Additionally, some months back when I too believing that it was " rare "

for one to have both RA and Lupus asked about it, I was told that

although " unusual " it is not rare but does make the treatment more

complex. And to make my treatment even more complex, one of the drugs

of choice for Lupus I have already proven to have a true allergy to and

a second one some nasty side effects......so much for making treatment

simple!!

>

> Thank you for your suggestions and concern, without knowing my history

they were very valid.

>

> Janie in OK