-question for your research magic

[Guest guest]

Hiya !

Ok-I have a question and I KNOW you will have probably multiple links with an

answer. As you know, the Remicade works pretty well for me. But in spite of

the fact it makes me feel better and decreases the swelling and all that

jazz, I think I am starting to see more ulnar deviation in my right hand. It

also

seems like the knuckles that are the worst don't ever go completely " down "

anymore. So my question (which I will also ask my rheumy) is, is progression

inevitable, and the treatments just delay it? Or should my treatment be

stopping the damage in it's tracks? I guess I'm not sure how much to expect,

and

what I just should accept. At this rate, I'll still end up on disability

eventually, even if the Remicade seems to be working. Thanks in advance for the

info

I know you'll have! Cary

[Guest guest]

Cary, you've asked a couple of tricky questions for which there are no

perfect answers. So much is still unknown.

It wasn't that long ago that rheumatologists used the " pyramid " strategy

for treating RA - start with no drugs or the mildest drugs and do a lot

of " wait and see " and slowly move up to DMARDs if necessary. Not only is

escalating the treatment required more often than not, the damage

sustained in the meanwhile is often permanent.

From what we do know now, the pyramid isn't a good idea. RA is viewed as

a progressive disease for most who have it - the damage will continue to

occur and at a faster rate with more complications for most of those who

do not try to counteract the inflammation with DMARDs. Why wait until

the damage is done before trying the most powerful treatments? Then

what? Also, the body as a whole suffers from the effects of systemic

inflammation that goes unchecked. RA impacts so much more than the

joints.

Remission can't be predicted and is unusual in the absence of DMARD

therapy. Overall, the toxicity risks of DMARDs are less than the danger

of allowing the inflammation to rage.

In your case, I would not accept anything less than trying to stop your

RA " in its tracks. " Today, one will often see the concept of " no

evidence of disease (NED) " being touted as the goal of RA treatment. I

believe this is the correct view. Halting the disease, not just toning

it down is what we should be shooting for. Obviously, we aren't at the

point where we can reliably achieve remission, but we should exhaust all

available options to attempt it.

If the Remicade isn't fully effective, and it seems from what you say

that it isn't, maybe you should consider a higher dosage or more

frequent infusions. Or perhaps switching to Enbrel + MTX or Humira + MTX

would be a good idea. Rituximab attacks the problem from a different

angle, and I believe it is a very promising RA therapy.

There is no guarantee the meds will work, but at least trying to stop or

slow the damage is essential. Better treatments are being developed, and

the current ones may be just enough to tide you over without allowing

too much cumulative damage to occur until better DMARDs are available.

I'm sending some information for you and the group on the topic in a

separate post.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] -question for your research magic

> Hiya !

> Ok-I have a question and I KNOW you will have probably multiple links

with an

> answer. As you know, the Remicade works pretty well for me. But in

spite of

> the fact it makes me feel better and decreases the swelling and all

that

> jazz, I think I am starting to see more ulnar deviation in my right

hand. It also

> seems like the knuckles that are the worst don't ever go completely

" down "

> anymore. So my question (which I will also ask my rheumy) is, is

progression

> inevitable, and the treatments just delay it? Or should my treatment

be

> stopping the damage in it's tracks? I guess I'm not sure how much to

expect, and

> what I just should accept. At this rate, I'll still end up on

disability

> eventually, even if the Remicade seems to be working. Thanks in

advance for the info

> I know you'll have! Cary