Saturday, November 5, 2011

Lupus Research Findings

Below are highlights of patient-focused research from Hospital for Special Surgery that will be presented at the Annual Scientific Meeting of the American College of Rheumatology (ACR) in Chicago, from November 5-9. This information was forwarded to me by the Hospital for Special Surgery. I have pasted it verbatim, minus the room locations for the conference. My comments on the research findings are inserted below each study.

Hospital for Special Surgery Physician-Scientists Share Advances in Rheumatology Research

Chicago, November 5, 2011—Hospital for Special Surgery physician-scientists who focus on arthritis, lupus, vasculitis and related conditions are traveling from New York City to Chicago this week to share their recent findings at the 75th Annual Scientific Meeting of the American College of Rheumatology (ACR).

Highlights of presentations by Hospital for Special Surgery physician-scientists include:

Most Women with Lupus Can Have Successful Pregnancy Outcomes

Investigators of the NIH-funded PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus) evaluated 333 pregnant women with lupus and found that 80 percent of patients had a favorable pregnancy outcome. The findings provide reassurance for patients with stable lupus, who are contemplating pregnancy, and suggest factors that merit caution for the minority of high-risk lupus patients. “Patients enrolled in this study had inactive lupus at the time of conception and during their first trimester, which we believe explains why a large majority of these women had successful and uncomplicated pregnancies,” explained Jane Salmon, M.D. “Now that our treatments are more effective and we have a better understanding of the disease, we can identify a window when pregnancy is safe and outcomes are good for mother and fetus. Our findings should change the way patients and physicians view pregnancy in women with lupus.”

[Would like to know more about the 20% who didn't do so well. It's nice to encourage people but also wise to caution them. What women should *not* to try get pregnant? I met a lupus patient who had survived 9 miscarriages. My next blog post will give further detail on their findings.]

Life Challenges Prevent Those with Lupus from Keeping Doctors’ Appointments 

Healthcare providers at the Mary Kirkland Center for Lupus Care observed that many patients failed to keep doctors’ appointments, which can lead to less-favorable outcomes in these lupus patients’ care. Researchers at the Center examined this patient population, largely homogenous with low socioeconomic status, and found that most of these individuals did not attend their appointments because of either tardy or unreliable transportation, such as ambulettes, or because of insufficient childcare. “Healthcare appointment compliance is critical for a lupus patient’s care, because timely communication with their physician keeps both parties up-to-date on prescription and care instructions,” explained senior author. Doruk Erkan, M.D. “By not following up with scheduled appointments, patients may stay on a course of medication that should be changed, which could quickly become dangerous.”  

[ OK, clearly the current system of patients schlepping all over the place and killing a half day to get 8 minutes with a doctor isn't working, especially for people of lesser means. Heck, even those of us of medium means, once we get there, have a hard time sitting around in crowded, germy, cold, fluorescent-lit waiting rooms. We obviously can't go back to the old days of house calls- doctors are too used to having everyone come to them- but perhaps we can move forward and embrace technology, allowing patients to phone, e mail, text, or skype in their appointments. It's not as good as in person, but it's better than people not having an appointment at all. And let me just point out, at least for me, the appointment is *two* appointments because I have to go to the lab a week before the appointment to get my blood drawn. That one can't be skyped or phoned in- I have to go- but maybe a traveling lab service? Maybe at a local Walgreens? I was at one point going to a clinic who wanted me to come every single week- one for labs, once for some other test, once for my appointment- and I wasn't allowed to drive because I wasa anemic. I had to get someone to drive me every time, and it was an hour from my house. I said "Can't I just get my blood drawn near my house?" They said, and I quote "Well this is more convenient for us." Seriously??? We have to make things more patient-friendly. Period. That is what I get from this research. ]

Rheumatoid Arthritis Patients Have Low Expectations After Knee Replacement Surgery 

Compared with osteoarthritis (OA) patients, individuals with rheumatoid arthritis (RA) who undergo total knee replacement surgery have lower expectations about their postsurgical outcomes. These lower expectations could cause some patients to slack on their postsurgical rehabilitation, leading to worse outcomes. The researchers compared 62 RA patients with 124 OA patients to make their conclusions. “If rheumatoid arthritis patients are healthy enough to have surgery, they should really expect good outcomes. It would be a real shame if these patients could have significantly improved function, but don’t because they expect to be able to do less in their postsurgery therapy,” said Lisa Mandl, M.D., co-author of the study and rheumatologist at Hospital for Special Surgery. “What we can do as doctors is ensure that we educate our patients properly,” said Susan Goodman, M.D., HSS rheumatologist who led the study.

[I don't have RA but I do agree with the belief and the finding here that is you expect a bad outcome, you will help create a bad outcome by both your belief and your actions which line up with that expectation- a.k.a "self-fulfilling prophecy."]

One-Year Results of Cardiovascular Intervention Program in Lupus and Antiphospholipid Antibody 

Results from the first year of a three-year cardiovascular disease prevention counseling program in lupus patients show that the program’s patients are motivated to better control their cardiovascular health by maintaining healthy diet and exercise regimes. However, while there was a significant improvement in diet and exercise habits, the findings do not show a significant improvement in clinical parameters such as high blood pressure, body-mass index, or cholesterol profile at one-year follow-up. “We’re encouraged that these patients are working hard to improve their cardiovascular health, and it is possible that they will have improved results after the study has reached the end of its third year,” said senior author Doruk Erkan, M.D. “These results demonstrate just how difficult it is for lupus patients to improve their cardiovascular disease risk factors that would be relatively easier to achieve in most other individuals.”

[OK, and now how about some info as to *why* this is the case? I guess in order to find this out I'd need to be at the conference this weekend. But, since I just learned about this conference, and my time machine and transporter devices are on the fritz, I'll just have to wonder. This is a very discouraging bit of news, that motivated lupus patients can change their lifestyles and yet not lose weight or improve their overall health. Why is this? Are they on drugs that cause weight gain? What diet cahnges and what exercises were they doing? More info, please. Don't leave us powerless and hopeless.]

Tweaking Withdrawal of Rheumatoid Arthritis Medications Before Surgery May Reduce Disease Flares 
To minimize infections, doctors stop giving anti-TNF medications before surgery.  These medications are powerful immunosuppressants and effectively control disease activity in RA patients.  However, it is not known how long anti-TNFs should be held prior to surgery to ensure the best outcomes in patients.  Stopping them too early may put these patients at risk for RA flares, which may complicate recovery. This study found no increased risk of infections in RA patients taking anti-TNF medications compared with those not on these medications, and a trend toward more postoperative flares in the anti-TNF patients. Different anti-TNFs were held seemingly arbitrarily, with no correlation to half-life.  Rheumatologist Lisa Mandl, M.D., senior author of the study, said more evidence-based studies are needed to determine optimal timing of pre-operative use of these medications.

[Interesting. Worth studying. I don't have RA, so not much else to say.]

Stress Triggers Disease Flares in Patients with Vasculitis 

Stress can contribute to disease flares in those with Wegener’s granulomatosis – a form of vasculitis that causes inflammation that destroys blood vessels. This is the first study to show that mental health is a risk factor for patients with vasculitis. “When this disease flares, people are really sick. It affects the lungs, sinuses, kidneys and nerves, and can cause fever and rashes,” said Robert Spiera, M.D., lead author of the study and director of the Vasculitis and Scleroderma Program at Hospital for Special Surgery. Dr. Spiera suggests that doctors be attentive to the psychological health of these patients along with their medical care.

[ Well, I'm glad we have a specific study to back up what we already know- stress triggers flares in ALL diseases. Science often seems to have the job of proving that common sense is... wow, true. But nowadays you can't go around spouting common sense without a scientific study to back you up, or you'll get sued. So, thanks science! Stress is BAD!]

About Hospital for Special Surgery :

Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at

About Carla Ulbrich:
Carla Ulbrich is The Singing Patient and author of How Can You Not Laugh at a Time Like This?, a book which has received the Lupus Foundation of America's Seal of Approval. She lives in Central New Jersey, has released 5 CDs of funny songs, and has strong opinions on the topic of lupus, as she has been living with it for 20 years. An avid user of alternative medicine and a reluctant user of mainstream medicine, there is hardly anything Carla hasn't tried to regain her health. And a lot of it worked. Carla is very active, and has fully recovered from stroke and kidney failure to resume touring and performing as a comical songwriter. Many of her songs are about her "adventures" as a patient ("Sittin' in the Waiting Room," "On the Commode Again," "Prednisone," etc.) Hear them here:

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