Re: painful joints/no swelling

[Guest guest]

-Hi ,

I used to get an enormous amount of swelling in my affected joints.

For the last 10 years or so I can get severe pain without the obvious

swelling. This caused 5 different doctors to tell me my PA

had " burned itself out " Unfortunately, when I went for an eval at

Mayo, x-rays,bonescans,etc showed considerable progression of bone

and joint damage. It still drives even the most respected Docs crazy

that they can't see a lot of swelling when I report a flare-up pain

wise. I had a concern that Remicade wouldn't work for me because of

this. Well, it immediately cleared my skin and took about 3-4 months

before I could say for sure it was helping the joints somewhat,

although not a miracle for me. The last Rhem I saw listed osteo

arthritis as the reason for continued damage with no swelling. I

would like to believe him but we are talking quite severe damage.

I have not had the opportunity to try Enbrel so cannot compare the

two.

Hope all of this helps you somw.

Best Wishes,

Marti

[Guest guest]

-Hi Sandy,

Thanks for sharing what your Rheum says about swelling. May I ask

what part of the country you live in?

Best Wishes,

Marti

[Guest guest]

In a message dated 9/25/2003 12:59:18 PM Eastern Daylight Time,

kleebull@... writes:

> He thinks that this is why most of

> the meds aren't working, and said since Enbrel didn't work that

> Remecaide won't touch it. He also states that the tendons that I'm

> having problem with are not PA related (elbow, achilles tendon). Has

> anyone had anything similar

I'm going throught the same type of problem now. Enbrel did not work on the

Pa but did clear up the PS. I went to the derm today and he said that a new

med called Raptiva is coming out in a month or two and then he would try that.

He said it is supposed to work on both. Has anyone heard of this?

Janet

[Editor's Note: Raptiva is a new biologic monoclonal antibody, subcutaneously

administered (under the skin, by needle) drug from XOMA and Genentech. In Stage

III trials, it has received approval for labeling for moderate to severe plaque

psoriasis, AND psoriatic arthritis. It will surely be worth a try, for those who

have not had any luck with other biologicals; while similar to the others, the

pharmacokinetics of Raptiva are a little different. No doubt it will be enough

of a difference to have an effect on a slightly different population subset.

D.]

[Guest guest]

In a message dated 9/25/03 5:05:48 PM Eastern Daylight Time, mlw402@...

writes:

> For the last 10 years or so I can get severe pain without the obvious

> swelling.

I have a theory on the pain with no swelling thing...I think our NSAIDs

control the swelling, but the pain can be there even without the swelling...I

had

pain and swelling until I started Bextra, now it is rare for me to have

swelling but I still do have pain.

[Guest guest]

> In a message dated 9/25/03 5:05:48 PM Eastern Daylight Time,

mlw402@a...

> writes:

>

>

> > For the last 10 years or so I can get severe pain without the

obvious

> > swelling.

>

> I have a theory on the pain with no swelling thing...I think our

NSAIDs

> control the swelling, but the pain can be there even without the

swelling...I had

> pain and swelling until I started Bextra, now it is rare for me to

have

> swelling but I still do have pain.

>

>

>Hi ,

I went off of NSAIDS just once in the last 10 years. It was for a

study on Celebrex and required that we stay off all NSAIDS for 10

days before the study started. I did get some mild swelling and also

due to the study my joints were examined very carefully so that the

Doc could feeL the inflammation more than see it. Also my sed rate

went up during that time.

Does your Rhem take your report of pain as a symptom of a flare?

Mine insists on seeing swelling.

Best Wishes,

Marti

[Guest guest]

I, too, get pain without swelling. This is in my hands

and wrists. Do you get along with this cramping of the

hands and poor coordination of the fingers.?

Norman

--- rachelviognier@... wrote:

> In a message dated 9/25/03 5:05:48 PM Eastern

> Daylight Time, mlw402@...

> writes:

>

>

> > For the last 10 years or so I can get severe pain

> without the obvious

> > swelling.

>

> I have a theory on the pain with no swelling

> thing...I think our NSAIDs

> control the swelling, but the pain can be there even

> without the swelling...I had

> pain and swelling until I started Bextra, now it is

> rare for me to have

> swelling but I still do have pain.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

At 07:26 PM 9/29/03, you wrote:

>I, too, get pain without swelling. This is in my hands

>and wrists. Do you get along with this cramping of the

>hands and poor coordination of the fingers.?

I have gotten hand cramping for a period of time (days or a few weeks,

depending) before all of my involved fingers swelled up. In fact, I'm

experiencing that now in a new finger, and I know beyond a shadow of a

doubt that it means that the arthritis has moved into yet another of my

fingers. I expect that within a week or two, this new finger will be

swollen up like the others.

I'm sure not everyone's body responds in the same way, but certainly for me

the cramping and hand pain can and do occur without the swelling... it's

just that for me, they're only precursors to the swelling. I'm sure in

other people there can be cases where it never moves to that next stage of

the swelling.

[Guest guest]

In a message dated 9/30/03 1:45:30 AM Eastern Daylight Time, mlw402@...

writes:

> Does your Rhem take your report of pain as a symptom of a flare?

> Mine insists on seeing swelling

My rheumie thinks pain=flare, no swelling needed. She says this is not

uncommon, and usually asks me to distinguish between pain from stiffness (in the

am

that goes away) vs pain that is somewhat constant. She also feels for

heat...inflammation in the joint can cause hot spots on your skin.

[Guest guest]

Dear ,

> I have a theory on the pain with no swelling thing...I think our NSAIDs

> control the swelling,

My own experience would speak against that theory. For well over a year I had

constant pain from PA, with several flares strong enough to stop me from

walking, and with the pain in my hands so strong that I stopped making certain

motions, which lead to partial atrophy of the muscles in my thumbs. But through

all this, I never had any detectable swelling, and I was not taking any sort of

antiinflammatory drugs during that time.

So, I know first-hand that there can be a lot of pain without any swelling,

without need of any drug inhibiting the swelling!

Cheers,

Manfred.

[Guest guest]

Thank you ! That information is very helpful to me. If I had

had your Rheum there is a chance (don't know for sure) that I could

have avoided more joint damage. As it is my hands are totally messed

up. I hope other people can benefit from this knowledge and not go

through what I did.

Marti

In a message dated 9/30/03 1:45:30 AM Eastern Daylight Time,

mlw402@a...

> writes:

>

>

> > Does your Rhem take your report of pain as a symptom of a flare?

> > Mine insists on seeing swelling

>

> My rheumie thinks pain=flare, no swelling needed. She says this is

not

> uncommon, and usually asks me to distinguish between pain from

stiffness (in the am

> that goes away) vs pain that is somewhat constant. She also feels

for

> heat...inflammation in the joint can cause hot spots on your skin.

>

>

>

[Guest guest]

> So, I know first-hand that there can be a lot of pain without any

swelling, without need of any drug inhibiting the swelling!

>

> Cheers,

> Manfred.

Hi Everybody,

I don't want to run this point into the ground but please seek

another opinion if your Rheum is like mine and insists that there be

swelling to have a flare. I waited too long to seek an opinion

outside my own region where they all tend to think alike and I have

major permament damage. I sure hope the group setting standards for

PA, GRAPPA, will come out in support of this! I have written a

letter to them explaining (I hope in a pleasant manner) my

experiences.

Marti