How to Choose the Best Rheumatologist 

By Dr Thomas, author of The Lupus Encyclopedia. He is posting a 15+ series on how 2 choose the best rheumatologist-

Dr. Thomas Google Plus Article HERE

 

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Lupus Study-Shocking High # of Wrong Dx’s

neverlupus

from Lupus Foundation of America:  Original Article Here

A Lupus Foundation of America study of over 3,000 adults with lupus found that 46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with this unpredictable and life-altering disease. Additionally, more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological.

The data was included in a cross-sectional study, “Lupus Diagnosis: Process and Patient Experience,” released by the Lupus Foundation of America today at the American College of Rheumatology (ACR) Annual Scientific Meeting (ACR) in San Diego. The study demonstrates the urgent need to shorten the time to obtain an accurate diagnosis – so people with lupus can begin critical treatment that will reduce damage to vital organs, such as the kidneys, heart, lungs and brain.

Previous studies have shown that it takes nearly six years from the time people with lupus first notice symptoms until they obtain a correct diagnosis. Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus – an important strategic objective of the Lupus Foundation of America.

“This study is so valuable because it’s the first in-depth look at the patient diagnostic experience,” said R. Paola Daly, Director of Research at the Lupus Foundation of America. “The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis.”

Through this study, the Lupus Foundation of America sought to identify barriers that impede lupus diagnosis and ways to improve its accuracy. Nearly 40 percent of those with lupus waited more than one year from the onset of symptoms to receive an accurate diagnosis. These findings underscore the importance of providing continuing medical education about lupus symptoms to both primary and specialty healthcare providers.

During the ACR Meeting (November 3-8), the Lupus Foundation of America will conduct on-site Facebook Live interviews with lupus researchers and other health professionals about the findings from their research studies. More than 35 Lupus Foundation of America funded researchers will be presenting on findings from their lupus studies. To learn more about the Facebook Live interviews, visit our Facebook event.

New Study Confirms That Stress & exercise Both Affect #LUPUS in Opposite Ways

 

#LUPUS Study: “Cardiac Tamponade is Common but Treatable”

#LUPUS Study: “Cardiac Tamponade is Common but Treatable in Lupus Patients” via #LNT #HeartOfLupus

Original Article via Lupus News Today Here

Cardiac tamponade, the accumulation of fluid around the heart, affects nearly 6 percent of lupus patients in India, a new retrospective study shows.

But researchers found new risk factors that predict this condition, which may help identify patients at risk. Treatment with high-dose immunosuppressives reduced the risk for fluid reaccumulation and the need for surgery in these patients, the team reported.

The study, “Cardiac tamponade in systemic lupus erythematosus,” was published in QJM: An International Journal of Medicine. It was conducted by researchers at the Institute of Post Graduate Medical Education and Research in Kolkata (IPGMER), in India.

Lupus is an autoimmune disease that affects several organs, including the heart. Pericarditis, an inflammation of the layers surrounding the heart, is the most common heart manifestation of the disease, affecting 9% to 54% of lupus patients. While it has a lower incidence (less than 2.5%), cardiac tamponade may also manifest.

Cardiac tamponade is characterized by the accumulation of fluids in the space between the heart and its protective membranes, leading to heart compression and low pumping capacity. But despite its severity, little is known about cardiac tamponade in lupus patients.

In a study led by Rudra Goswami, a post-doctoral trainee in the Department of Rheumatology at IPGMER, researchers evaluated the incidence of cardiac tamponade, its clinical features, potential risk factors, and treatments in a cohort of Indian lupus patients.

The study included 409 lupus patients. Among them, 25.4 percent had pericarditis and 5.9 percent had cardiac tamponade.

Patients with tamponade were older and had later lupus onset, compared to the remaining lupus patients. All 24 patients with cardiac tamponade experienced shortness of breath; 12 had increased jugular venous pressure; 11 had chest pain; and eight had low blood pressure.

All patients with cardiac tamponade had accumulations of liquid around the heart (pericardial effusion), 14 with large effusion, seven with moderate effusion, and three with small effusions.

They showed higher prevalence of pleuritis, which is an inflammation of the membrane surrounding the lungs, inflammation of the pancreas, and were more prone to present anti-nucleosome antibodies, a biomarker of lupus.

Additional analyses confirmed that pleuritis, anti-nucleosome antibodies, and the size of effusion were all predictive of cardiac tamponade in lupus patients.

All patients underwent aspiration to remove the accumulated liquid. Three patients required more than one aspiration due to re-accumulation of liquids, and only one required surgical treatment. The majority of patients received corticosteroids and immunosuppressive drugs, which were found to be effective in preventing progression of cardiac symptoms and reducing the need for surgery.

“We made a few important observations, such as the importance of concomitant pleuritis and anti-nucleosome antibody positivity in addition to size of pericardial effusion as predictors of tamponade,” the researchers wrote.

“We also feel that immunosuppression with methylprednisolone and IV cyclophosphamide are essential, especially to reduce risk of reaccumulation and surgery,” they added.

3 Easy Steps To Find The Right Doctor!

lifechangeWhy is the right doctor important?

You MUST want to follow your medical plan in order to have the most quality of life when you’re living with chronic conditions.  In order to do that you MUST WANT to live up to your physician’s expectations based on your treatment plan.  If he/she doesn’t have expectations of your disease and your health, then you have NO PLAN.   No PLAN?  Get one!  Here’s how:

one

 

  1.  The Appointment

Bring the FOUR P’s for your PLAN:  Pad, Paper, Pen & a Person.

This shows you mean business.  Your here to write down your medications, the times you take them, what to do if they are causing side effects or need adjusting, to bring medical issues to your doctor’s attention (try & keep them down to 3), and to listen, learn & make a list (The THREE L’s) to bring some improvement into living with your chronic condition!

Bring someone with you to your appointment, they are your BACK-UP.  They are there to do everything you are doing & to share notes with afterwards!  Bringing someone with you to your appointment can make all the difference- some physicians may take their questions more seriously than if you asked it.  People who know you and your symptoms may not be as afraid to tell the doctors what and how intense some of the symptoms you are having REALLY ARE!

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2.  What if your doctor still doesn’t seem to be listening?  Make an appointment for one reason, and one reason only.  To talk.  Q & A time.  You can even ask the doctor to see you AT HIS or HER DESK!

“Why?” you ask?  This shifts the dynamic of the appointment in several important ways!

It puts you, the patient,  eye to eye with your physician- it reinforces that you and your doctor are a TEAM with one goal in mind:  YOUR SUCCESS at living the best life you can under the circumstances of having compromised health.

It shows your physician that you are serious about your health!  And that’s something ALL DOCTORS WANT TO HEAR!  This will not only impress your physician, but it will bring you closer together as a TEAM.

And last but not least-

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3.  The Follow Up:

Without actually following up with your doctor, all your hard work can go down the drain!

This is the time where you make an appointment with your doctor to discuss how the medications are working, the intensity of your symptoms and any new symptoms.  If you’ve done your job your physician is now attentive to you and your health goals.

The RIGHT DOCTOR can make all the difference in your efforts for quality of life.  When you have a doctor who believes in you- you will try harder!  It really makes a difference!

If you’ve spoken to your doctor and you aren’t getting that “team vibe”, and it’s more than “he seems too busy” or “he’s having a bad day” kind of thing, it may be time for hiring a new one!  Yes, your physician works for YOU.  YOU are paying HIM.  And don’t feel bad, a good fit is very important to your success.  Doctors are like night and day., they truly are.  No one is alike.  Feel free to go so far as to INTERVIEW your doctor before you commit to being a patient at his/her office!  You are ENTITLED to choose your doctor! After all, there is nothing more important to you than YOUR HEALTH!

 

 

 

 

When you get home ORGANIZE your medications.

 

Hey! Chronic Pain Patients- Fight Back!

painknuckles

My little-ole story really isn’t much.  There’s lots of pain patients just like me!

What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working!  None of us expects to be pain-free. But managing is power!

Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.

I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.

Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.

That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.

I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.

I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you!  You gotta kiss a lot of doctor frogs before you find a prince!  Don’t be afraid to find one that you have the right fit with!

My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.

Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now!  He’s given me quality of life and I am grateful for his expertise.  He’s offered me procedures I didn’t even know existed!  Thanks to him I am mobile.  I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!”  WHAT?  And he DID!  Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure!  NO kidding!  Goes to show that you never know what one doctor knows that another one doesn’t!

A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.

Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.

Kudos to all you do to get our voices heard!

If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!

And here’s a link to JGF Advocacy Group on fb:  Pain Is Not Addiction FB Site!

Sincerely, JJ

WHAT’S YOUR STORY?  Plz share in comments!