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Rheumatoid Arthritis Swelling, Take Two

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Disney's Rapunzel frying panIn honor of the blog’s 2nd birthday, let’s consider some issues that have been significant over the last two years. Today we’ll consider Rheumatoid Arthritis swelling. This may be blunt. More like a frying pan than a sword.

Talking turkey on Rheumatoid Arthritis swelling

A couple of years ago my kind-but-clueless-what-to-do-next (her word) rheumatologist told me two things that provoked my online journey to go deeper and farther. After two and a half years on high doses of Humira and methotrexate, my RA symptoms were not improved. Disability progressed even though obvious external swelling had subsided.

Two significant things Dr. KBC (kind-but-clueless – her word) said:

1) I don’t have a clue what to do with your RA. It does not look typical any more.

2) You cannot have x-rays done because you have a systemic disease. There is no justification for x-rays.

I searched online for patients like me. I searched for some kind of explanation why my RA hurt more than ever, with constant fevers, and joint instability. Why did some claim those symptoms are only possible or relevant if obvious external swelling is present?

I listened to patients and blogged for almost a year before I made my Rheumatoid Arthritis swelling confession. But, there are 224 331 replies on that post. If you’re confused about Rheumatoid Arthritis swelling, you could learn a lot there.

When I got the courage to leave Dr. KBC, I met a series of rheumatologists who either insisted that I was in remission or that I really have fibromyalgia BECAUSE my “inflammatory indicator” CRP and my swelling both say I’m fine. Each of them was adamant.

Like Goldilocks, I held out for the one that seemed just right. Did you see me cry in the Good doctors treat patients video? We were overjoyed to finally meet Dr. Smart Rheum who said wonderful things like this:

  • “You DO have swelling. I can feel it when I examine your joints.” (Examining my joints was a novel experience.)
  •  “Tests don’t always show disease activity. You have to look at the patient. It’s the patient that matters.”
  •  “What do they mean ‘You don’t look like you have RA? What does RA look like?’”
  • “Swelling does not have to be on the top of your hands. The other side is swollen.”

Last week Dr. Perv told me “You have no kind of arthritis at all. You have no swelling. You claim to have pictures of swelling, but you have none.” I said, “My knees are swollen right now on the back-” “NO they are not!” he interrupted without ever looking at my knees.

Note well: most “asymptomatic” patients have synovitis & bone edema

persistent synovitis in so-called remission

There are some links to support our case on that first swelling post, but there’s one I somehow missed until recently. Dr. Brown’s study at the American College of Rheumatology (ACR) in 2006 showed that patients who rheumatologists label as “in clinical remission” due to lack of visible symptoms are experiencing damaging disease activity. Active synovitis and internal swelling can be detected with skillful use of the appropriate tools. Bone marrow edema is another critical unseen aspect that doesn’t look like RA to the naked eye.

 “Even in asymptomatic patients with clinically normal joints, MRI showed that 96% had synovitis and 46% had bone marrow edema, and ultrasound imaging showed that 73% had gray-scale synovial hypertrophy and 43% had increased power Doppler signal,” they report. Mild synovial thickening was seen in three of the 17 control subjects (18%), but none had bone marrow edema. Brown et al point out that synovitis in RA is a link between inflammation and structural damage and they predict that the patients in this cohort who had synovitis are at risk for subsequent structural damage. They suggest that such persistent, active synovial inflammation may explain the adverse RA outcomes seen even in patients who meet the ACR and DAS28 criteria for complete remission. This is a large study and needs to be taken seriously,’ said Professor John R. Kirwan, consultant rheumatologist and professor of rheumatic diseases at the Bristol Royal Infirmary, in the UK,” RA Remission Often Accompanied by Silent Synovitis.

Was it? Taken seriously? Maybe more rheumatologists need to hear about it.

Now I finally have persistent swelling. My knees have had Baker’s cysts behind them for almost a year. They’ve been painful and stiff for five years, but now I have something that brings a little sympathy. The fronts of the knees also swell periodically.

“Asymptomatic” is in the eye of the beholder.

Now I have an opposite problem. They deny that THIS is swollen.

Read my lips. I’m. Thin. These are not fat knees. They are swollen.

I went through the same thing with my pregnancy with Roo. My feet were can’t-wear-shoes-huge, but the midwife said they weren’t swollen. After Roo was born she remarked, “Oh my god you’re right – your feet are skinny.”

Enough.

We don’t have time for it. We are supposed to be treated “early and aggressively.”

How can we be if so many doctors don’t recognize RA because they have a wrong mental picture of it?

So why does this myth persist?

Happily, others are speaking up  about Rheumatoid Arthritis swelling also.

More Frying Pan posts – click here.

Edit: Link to original Musculoskeletal Report article updated to a current link to the Brown swelling study, here: 
ARTHRITIS & RHEUMATISM
Vol. 54, No. 12, December 2006, pp 3761–3773
DOI 10.1002/art.22190

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Kelly Young. All rights reserved.

This entry was posted on Monday, May 23rd, 2011 at 6:00 am and is filed under RA Education, Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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