Re: More pain but inflammation down? What's up?

[Guest guest]

i too, had the same confusion, i was intially more concerned about the sed rate

than the arthritis however, my sed rate is now within normal ranges but the

disease is still slightly progressing. bummer on that but good progress on the

sed rate

i am guessing the sed rate is a reaction to the arthritis and that part of it

they can control.

[Guest guest]

ERIKA, HI. I HAVE FLARES/PAIN/STIFFNESS/SYMPTOMS WITH 'NORMAL OR NEAR NORMAL

BLOODWORK'. JUST BECAUSE YOUR BW IS OK DOES NOT MEAN YOU MUST FEEL OK. MY

DOCTORS ALWAYS SAY WHEN MY BW IS OK THAT I NEED TO TELL THEM HOW I FEEL ANYWAY

AND THEY TRY AND TREAT ME AND NOT THE PAPER THAT THE BW RESULTS ARE ON. I HAVE

PA, P, LUPUS AND PROBABLY SOME FIBROMYALGIA. I TAKE SALSALATE, PLACQUINIL, FOLIC

ACID AND 8 WEEKS AGO ADDED MTX 10 MG ONCE A WEEK. MY BW IMPROVED WHEN I

INCREASED MY PLACQUINIL BUT I DIDN'T SO THE MTX WAS ADDED AND IS HELPING. SO

WHAT I'M GETTING AT IS THE BW IS A GUIDE AND YOUR DRS SHOULD BE ABLE TO FIND

SOMETHING THAT WILL HELP YOU TO FEEL BETTER. TAKE CARE. MARYLOU

[Guest guest]

My guess is that you're feeling better simply because the pirixocam is a

stronger NSAID than Daypro. However, it's my understanding that NSAIDs will not

reduce the potential for long-term damage to your joints that is bound to come

if you are not treated with a different kind of medication specifically designed

to deal with the problems caused by auto-immune diseases, such as PA, RA, Lupus,

etc. I would strongly suggest that you see a rheumatologist. I'm actually

surprised that your primary care physician has not already referred you to one.

I can't explain the reduction in inflammation levels as measured by the sed rate

test at the same time your pain is increasing (maybe others can who have had the

disease longer than I); however, there could have been an error in the test

(wouldn't be the first time) and there are other measures of inflammation that

perhaps could/should have also been done, such as the C reactive protein. Good

luck and please

don't just let this go simply because you're feeling better at the moment.

Joanna Hoelscher

630-833-7361

[Guest guest]

Hi ,

I have had rheumatoid and psoriatic arthritis for some 25 years. During

that time, my sed rate has always been in the " normal " range. This is despite

the fact that my RA Factor was constantly in the 1000s, the highest my

rheumatologist had ever seen.

Sed rate is not the only indicator of inflammation, and, I believe, it is

not the most reliable. In my humble opinion, I think that the most reliable

indicator is -- you. You know what you're feeling, and you know that your

body tells you.

Some doctors will try to dismiss what you feel with a swift " but your sed

rate is fine. " Take it from me: sed rate is not the final determination of the

disease. I have joint damage (seen on x-rays) in my wrists, hands and feet

and other severe damage from arthritis, but my sed rate? It's always okay.

You know what's going on with your condition. Don't let anyone tell you

anything else.

Good luck,

BeingIrish

[Guest guest]

This is not uncommon -- I had results on my blood work that showed a reduction

in inflammation levels too, but was suffering considerably more pain, stiffness

and fatigue.

Fortunately, my family doctor listens more to what her patients are telling her

than what she sees on her computer screen, and tells me that sed rates are not

an infallible measure of the discomfort someone may be experiencing. Not all

doctors are as enlightened, however: I have been told that I feel better when I

don't, and have sometimes come away from consultations wondering if my pain is

" real " , or at other times losing all faith in the medical profession! This

really doesn't help when you're trying to deal with a disease such as PA. Sounds

like you're lucky with your doctor, if he just shrugs and gets on with

treating your illness.

Nobody has yet given me a satisfactory explanation of why blood results should

be so different from the reality of how I feel, nor why some PA sufferers carry

a specific genetic marker and others don't, or even why PA comes and goes with

flare-ups and remissions for no apparent reason. There's obviously need for a

great deal more research.

Glad that you've found a medication that gives you some relief though. Just

don't let anybody else tell you how you should and shouldn't feel!

Marcus

[Guest guest]

For those of you who have had this disease for a while and have " normal " sed

rates, how do you distinguish pain from PA from pain caused by osteo? I only

recently developed symptoms of a systemic inflammatory disease and was very

quickly diagnosed with PA; however, I've had osteo for years. One knee

replacement six years ago (which is fine now), some osteo in the other knee and

avascular necrosis in my shoulder for probably 12 to 15 years. Both started

causing pain before the PA started and both continue to cause pain. My sed rate

has gone from 65 to 38 after not quite 2 months on Enbrel and the swelling that

I had so terribly in my legs, ankles and feet is gone. Otherwise, I notice no

difference in pain levels from the osteo, AVN. I'm assuming that since osteo

results from wear/tear and the aging process, it can continue even when the PA

is under control - but I may be wrong.

Anyway, any advice that you all can provide on this would be helpful. I am

struggling with the " pain " issues now and am continuing physical therapy to

determine how much of what I'm experiencing is caused by my knee, shoulder

joints and how much by other mucular-skeletal issues related to ribs, neck,

fallen arches, weak ankles, etc. that have been with me for years that they

believe could be contributing significantly to my " joint " problems. I don't

want to return to the ortho and move forward on joint replacements that end up

not resolving the pain problems I have and don't quite know how the PA fits into

all this yet. For what it's worth, it's these same physical therapists who told

me they thought I was beginning to develop a systemic inflammatory diseases near

the end of rehab for a badly torn rotator cuff/biceps tendon. Until then, the

osteo in my knee and the AVN in my other shoulder had been under control but

both got somewhat " overworked "

during rehab so that's why it's really been hard to tell what has caused the

pain I'm having now. Is it the PA, or is it just the fact that they both had to

assume too much burden during my rehab when the arm that was operated on was out

of commission for a good 3-4 months? Or some combination thereof?

Joanna Hoelscher

630-833-7361

Re: [ ] More pain but inflammation down? What's up?

i too, had the same confusion, i was intially more concerned about the sed rate

than the arthritis however, my sed rate is now within normal ranges but the

disease is still slightly progressing. bummer on that but good progress on the

sed rate

i am guessing the sed rate is a reaction to the arthritis and that part of it

they can control.

[Guest guest]

My inflammation markers, both SED rate and C-reactive protein, have

always been within normal ranges - even when I have sausage fingers

and toes and obvious heat and redness in multiple joints. They can

be high normal when I feel better and lower normal when I feel

crummy. Thankfully, both my derm and rheumy have seen the obvious

inflammation with their own eyes and so they don't pay attention to

that part of the bloodwork! It's frustrating, I know, but we are

blessed to have doctors who don't swear by the bloodwork.

best regards,

sherry z

[Guest guest]

Hi ,

Your sed rate doesn't prove or disprove anything when it comes to PA.

I was barely walking, had multiple sausage fingers & toes, was in

constant pain from many joints, yet my sed rate was " slightly elevated " .

I'm not familiar with the drugs you are taking, but it seems like you

are only taking drugs for pain relief. NSAIDs and pain relief are

necessary, but unless you are also taking something to slow your

disease like MTX,Enbrel or Humira, you will likely only continue to

worsen and need increasing amounts of pain relievers.

Perhaps your Rheumy hasn't settled on a diagnossis yet, very common.

Whether you have RA or PA, in many cases treatment can begin because

treatment is very similar. Talk this over with your rheumy.

Stay Well,

[Guest guest]

Thank you all for your comments. I sure left the doctor's office feeling

confused that day! But I knew that you'd all have some ideas!

Okay, so I was under the impression that the NSAID's would reduce the

inflammation and that would help protect my joints from damage. Is this true

or not?

My plan (and my dr's) has been to try NSAID's first, and if they are

ineffective, moving on to the " big guns " like methotrexate, etc, would be

the next option. I haven't seen the rheumatologist yet because there is only

one, takes ages to get in, and from what I've heard, he's pretty

vain...didn't sound like someone I wanted to deal with. I really like my

regular doctor, and he listens to me, so I've just stuck there for now.

[Guest guest]

I'm not sure exactly why it can happen but I know that it can happen

exactly as you said. I have been taking Lodine for quite some time

with sort of limited success. It brought the inflammation down to an

acceptable level and kept the pain tolerable. My Rheumy decided I

should try Sulindac because he said some anti inflamms work better

than others on some people. The inflammation stayed on a pretty even

keel but the pain went WAY up. So the two do seem to be seprate

somehow. To top it all off, it even gave me tremors so it is

certainly not the medicine for me. I guess that is really the crux of

the issue though. You just have to keep trying until you find the

right one or combination of medicines. Keep on keepin' on and

remember we're here to listen if you need it.

Deanna

[Guest guest]

It's my understanding that NSAID's only deal with the pain from current

inflammation. They do not protect the joints from future inflammation . . ..

particularly if you have a systemic inflammatory disease like we all do. I

can't advise ou on your choice of doctors but it's my feeling that advice or

consultation with a rheumatologist is advisable. I really like my PCP, too;

she's an internist and did not hestitate for one minute to send me to a

specialist when she did preliminary tests and saw that my sed rate was, indeed,

abnormal, and that my phsical therapist was very likely correct in her belief

that I was developing some kind of new condition.

Joanna Hoelscher

630-833-7361