aggressive treatment

[Guest guest]

Hey, Tom, I was hoping for some easier questions, LOL! My brain and

fingers hurt today.

I disagree with the last rheumatologist you and your wife saw - on the

contrary, I believe that RA is a disease you either have or don't have.

Could it be that he meant that usually the degree to which you are

initially affected correlates well with the ease with which a physician

is able to make the RA diagnosis? That's true, but it doesn't

necessarily mean that subtle early cases can't be identified. It is a

challenge, and you must seek an experienced, patient, compassionate,

smart physician who has a bit of Sherlock Holmes in his or her blood. I

believe there are such creatures.

Unfortunately, RA is often very difficult to diagnose in the early

stages, and the list of possibilities in the differential diagnosis is

fairly long - therein lies the danger of treating before you have the

correct diagnosis. My favorite example of what can happen if the

diagnosis is made in error is the case where early systemic lupus

erythematosus (SLE) and early RA are confused - not an uncommon

scenario.

In the case where RA is assumed but the patient in fact has SLE,

treating with anti-TNF agents (like Remicade and Enbrel) may harm rather

than help. Too, kidney damage is common in SLE and not as prevalent in

RA. Would a renal development be missed? Worse yet, what if a patient

affected with SLE's kidneys are damaged with RA drugs? Conversely,

assuming SLE when it's really RA could allow the patient to develop

irreversible joint damage (if you assume SLE, you wouldn't typically be

on the lookout for erosions or treating in an attempt to prevent them).

Both patients and rheumatologists face a very challenging situation: an

early diagnosis is desirable so that you can relieve symptoms and avoid

permanent damage, but an incorrect, premature diagnosis and

inappropriate treatment can be quite detrimental, too. Some

rheumatologists and other types of physicians claim that the correct

diagnosis isn't really that important and that many rheumatic diseases

are treated in the very same way. True in some cases, but not all. What

about the above examples (and there are many others)? Treatment and

monitoring are safest and most successful having made the correct

diagnosis first.

I do have thoughts on antibiotic therapy for RA. Although it is a fairly

low-risk strategy for a given individual who has early, mild RA, the

effects worldwide may not be desirable (the overuse of antibiotics

problem). And though minocycline has been shown to be effective as a

treatment of mild to moderate RA in some trials, particularly in early

RA, we don't know too much about the mechanism of action (not that we do

with most other RA drugs) and the long-term benefits and dangers (not

that we know this of all other RA drugs either). There are several

theories about why antibiotics work for some people with RA, as you are

probably aware, but no consensus regarding why it provides relief.

Moreover, it has not been proven whether minocycline will retard joint

damage. Numerous claims of undocumented " cures " of RA due to antibiotic

therapy are irresponsible and exaggerated.

Having said all that, I was on Minocin (minocycline) for almost a year

and a half. I did feel better after several months of treatment;

however, I hesitate to draw any conclusions from my own experience. My

diagnosis, which started six years ago as probable RA, then has been any

or some combination of the following: polyarthritis, RA, osteoarthritis,

possible autoimmune thyroid disease, possible lupus, Raynaud's

phenomenon, possible Sjogren's Syndrome, mild connective tissue disease,

and the ever-popular " I don't know, " is still inconclusive six years

later. But, I am, very fortunately, doing well.

I went to the Mayo Clinic in Rochester, MN in late 1999. They told me

they believed it was not RA, but possibly Sjogren's Syndrome or a mild

connective tissue disease of some sort. They recommending discontinuing

the Minocin and using hydroxychloroquine if I continued to have

problems. At the moment, I use only ibuprofen when necessary. Previous

to the minocycline, I took Voltaren (diclofenac sodium).

If anyone with early RA is considering minocycline therapy, I think it's

worth a try, but, in the presence of erosions, a large number of

extremely swollen/tender joints, or significantly elevated levels of

ESR, CRP, or RF, I would recommend it in combination with another DMARD.

And I believe the patient's rheumatologist is the best person to help

make that decision.

So, I believe that Celebrex is a safe approach for your wife for now or

Minocin would be, too, unless your wife has other more ominous signs of

RA. Has she had x-rays or MRIs that revealed erosions or any suspicious

blood test results?

[ ] aggressive treatment

> Hi :

>

> The diagnosis is in question mainly because she

> doesn't meet all the requirements for full diagnosis.

> But it seems in line with the experience of countless

> people on this list that they suffer for years before

> finally getting diagnosed. The last Rheumy we saw

> told us that RA is not a disease you either have or

> not have, " it is a matter of degree " -- ie you must

> wait to get pretty sick to be diagnosed. Do you agree

> with this assessment?

>

> I suspect that it is too early for DMARDs -- they are

> not nice medications. But we're tempted to try

> Antibiotic Therapy. 70% rates of improvement are

> reported in repsectable literature -- certainly no

> lower than for Kieneret, say, and with fewer side

> effects. Can you comment?

>

> Many thanks!

>

> Tom Potocki -- who preferred to be married to his wife

> when she was in full health... ;-)

[Guest guest]

Dear Marcia,

Thanks for sharing your thoughts about agressive treatment. You guys have

inspired me to really push my doc when I saw him in a couple of weeks!

Have a wonderful Thanksgiving!