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Communication

Hospitalized with autoimmune disease

Elizabeth · January 6, 2022 ·

The truth is, only a minority of patients with autoimmune disease will ever really need to put this information in action. When you are hospitalized with an autoimmune condition you feel scared and helpless. Knowing what to expect and how best to take care of yourself during and after your hospital stay BEFORE it ever happens is self-care every autoimmune patient needs. 

Regardless of the incredible advancements we’ve made in rheumatology, sometimes the safest place for an autoimmune patient is the hospital. This could be to receive IV (intravenous) treatments, to undergo certain tests quickly or to stabilize and monitor worrisome vital signs. Autoimmune patients, in particular, can find themselves needing the hospital as there is a wide variety of symptoms possible.

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When the anti-CCP antibody is negative

Elizabeth · November 4, 2021 ·

Coming to a diagnosis of Rheumatoid Arthritis (RA) can be easy. We are spared months of bouncing between doctors and tests if we have the “right” symptoms and the “right” labs. Unfortunately, for many, the road to a RA diagnosis isn’t quite so quick. This is most commonly seen when the Rheumatoid Factor (RF) is positive but the anti-cyclic citrullinated peptide antibody (anti-CCP) is negative. 

As we’ve spoken about before, the RF antibody blood test is far from perfect. Despite its name, the Rheumatoid Factor is not specific for RA. In fact, it is seen in many other medical conditions (including the condition of “getting older”). Usually ordered with a RF (and if not with, then usually immediately afterwards) is the anti-CCP antibody. This antibody is MUCH more specific for RA and is seen in individuals years before developing RA symptoms. After 20+ years of practice, it is now standard of care to order an anti-CCP when concerned about RA. And our dependence on it can lead many to be confused when it returns negative.

[Read more…] about When the anti-CCP antibody is negative

Mixed Connective Tissue Disease

Elizabeth · October 26, 2021 ·

It is rare for someone to get a diagnosis of Mixed Connected Tissue Disorder (MCTD) right away. Most people bounce around from specialist to specialist, collecting diagnoses before they are finally diagnosed with MCTD. This, understandably, leads to confusion and some trust issues. How could it have taken so long to get to a diagnosis? How can you be sure it’s MCTD?

And patients aren’t the only ones confused. Doctors, especially non-rheumatologists, can be confused by MCTD, opting to use the short-hand “lupus.” In many instances, that may be ok, but for the Rheumatologist, and patient, the distinction is important.

[Read more…] about Mixed Connective Tissue Disease

Complements & Lupus

Elizabeth · October 21, 2021 ·

If you have ever seen a Rheumatologist or there has ever been concern for lupus, you most likely have had your complement 3 (C3) and complement 4 (C4) tested. Unfortunately doctors do not do a great job of explaining these tests or their results, but are more often than not, considered when your doctor is assessing whether your lupus is “active” or “quiet.”

The complement system is complex and most doctors, aside from rheumatologists and immunologists, do not remember the specifics of the “complement cascade.” But you don’t need a PhD in immunology to have a basic understanding of how complements work and what they can teach us about our body.

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Why everyone asks if you are depressed

Elizabeth · September 21, 2021 ·

I’m not depressed!

And besides, wouldn’t you be if you were in pain all the time?

I know this conversation all too well. It is a conversation that takes longer than the 15 minutes we are given with our doctors. Why do doctors keep bringing this up? We worry that talking about our emotional state could label us. Doctos will assume it’s all in our head and our concerns and symptoms will no longer be taken seriously. These concerns are valid as I’ve, unfortunately, seen issues go unchecked in patients where too many assumptions were made. But despite this real concern, we shouldn’t dismiss the opportunity to investigate the way emotions may be impacting our symptoms.

[Read more…] about Why everyone asks if you are depressed
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