Most Women with Lupus Can Have Successful Pregnancy Outcomes

Most Women with Lupus Can Have Successful Pregnancy Outcomes

Results from Multicenter NIH PROMISSE Study Find Pregnancy Safe for 80 Percent of Women with Lupus

Chicago, November 5, 2011—Promising research led by investigators at Hospital for Special Surgery may offer hope for women with lupus who once thought that pregnancy was too risky.

Results from the multicenter National Institutes of Health (NIH) funded PROMISSE initiative, being presented Monday, Nov. 7 and then during a press conference on Tuesday, Nov. 8, during the American College of Rheumatology’s 2011 Annual Scientific Meeting in Chicago, show that most women with stable lupus can have successful pregnancies.


“There was a misconception, based on outdated experience, that women with lupus should not try to have children,” said Jane Salmon, M.D., the study’s senior author and Collette Kean Research Chair at Hospital for Special Surgery in New York City. “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.”

Historically, women with systemic lupus erythematosus (also know as SLE or lupus) have been advised not to become pregnant because of risks to their own and their fetus’ health. SLE is a chronic inflammatory disease, in which the body’s own immune system attacks tissues of the body and can cause complications during pregnancy.


Drs. Salmon, together with Jill Buyon from New York University Medical Center, and their collaborators evaluated 333 pregnant women with lupus from the PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus), which seeks to identify biomarkers that predict poor pregnancy outcomes. The research team found that 80 percent of lupus patients had a favorable pregnancy outcome.

Patients with lupus may be free of symptoms for long periods of time and then experience a disease “flare,” when symptoms such as rash, joint pain, chest pain, swollen legs, bruising and/or fatigue suddenly appear.

“Most women with stable lupus, defined as limited disease activity and no flares during the time of conception and the first trimester, had successful pregnancies,” explained Dr. Salmon, who is also the principal investigator of the PROMISSE Study. “We learn from these results that timing is a most important element for successful pregnancy in women with lupus and that avoiding pregnancy during periods of increased disease activity is essential.”

In the study, two categories of pregnancy complications were evaluated: the health of the mother and of the fetus. The research team studied development of mild, moderate, or severe increases of lupus activity, or flares, in expectant mothers. For the fetus, the study examined the worst outcome – death – or situations in which the well-being of the child would require extended hospitalization in a critical care unit.

Of the 333 women with lupus studied, 63 had poor outcomes. Ten percent of mothers experienced preeclampsia, a serious complication characterized by the onset of high blood pressure and appearance of protein in the urine. Ten percent experienced mild or moderate flares at 20 weeks and eight percent experienced flares at 32 weeks. Nineteen women experienced death of the fetus and 30 women delivered before 36 weeks or had newborns of small gestational size – smaller in size than normal for the baby's sex and gestational age, commonly defined as a weight below the 10th percentile for gestational age.

None of the women in the study was pregnant with more than one fetus, took more than 20 mg/day of prednisone, or had abnormally high excretion of protein or impaired kidney function. The women who experienced complications had more active lupus at 20 and 32 weeks and higher levels of antiphospholipid antibodies.

[My question here is- did the pregnancy trigger the flare for these women? If the active lupus doesn't kick in until week 20, the women is already pregnant at the time the flare starts, so her lupus being "stable" is not a guarantee that her pregnancy will end well. How can we know whether a woman is in that 80% or the 20%? Since I have met women with lupus whose pregnancies ended in miscarriages and one whose pregnancy triggered a flare that is still active, 10 years after the fact, I would still temper the hope for a good outcome - very good news for women with lupus who deeply desire to bear their own child- with the caution of a possible very bad outcome. Know the risks going in- for 20% of these patients, the pregnancy had a bad outcome. How is that statistic in comparison with healthy women? How many healthy women have pregnancies resulting in their own poor health and/ or miscarriages? Probably not 20%. Of course, 80% of pregnant lupus patients having a desirable outcome is far better than we believed it would be.]

The PROMISSE study was funded by the National Institute of Arthritis, Musculoskeletal and Skin Diseases of the National Institutes of Health in 2003 to identify biomarkers that would predict poor pregnancy outcomes in lupus patients. To date, the PROMISSE investigative team has enrolled 647 volunteers who are monitored with monthly checkups and research laboratory studies looking at genes and circulating proteins that may predict the course of pregnancy. PROMISSE will continue through 2013 with $12.3 million in support over ten years from NIAMS and the office of Research in Women’s Health. Dr. Salmon and co-investigators from 11 academic centers will continue to examine a broad range of genes and molecular pathways that can affect pregnancy in women with lupus, and, it is anticipated that their findings will have applications for the prevention of miscarriage and preeclampsia in healthy women.

The PROMISSE Study is coordinated by Dr. Salmon; Other investigators include Michael Lockshin, M.D., and Lisa Sammaritano, M.D., at Hospital for Special Surgery; Jill Buyon, M.D., at New York University School of Medicine; Ware Branch, M.D., at University of Utah Health Sciences Center; Carl Laskin, M.D., at Mt. Sinai Hospital in Toronto, Canada; Joan Merrill, M.D., at the Oklahoma Medical Research Foundation; Michelle Petri, M.D., MPH, at Johns Hopkins University School of Medicine; Mimi Kim, D.Sc., at Albert Einstein College of Medicine; and Mary Stephenson, M.D., at the University of Chicago.

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 www.hss.edu.

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 www.hss.edu

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:
 www.thesingingpatient.com

Enter to win a year's worth of Gluten Free Goodies!

Hello my Gluten-free friends!

Just stumbled upon this chance for you to win a year's worth of Gluten Free Yummies from French Meadows Bakery. The info is on Christine Miserandino's "But You Don't Look Sick" website:

http://www.butyoudontlooksick.com/articles/spoon-lady-speaks/win-1-year-supply-of-french-meadows-bakery-organic-gluten-free-products/?utm_source=feedburner&utm_medium=twitter&utm_campaign=Feed%3A+bydls+%28ButYouDontLookSick.com%29

Sounds yummy, and I do feel better since going gluten-free several years ago. Remember of course, even gluten free cookies are still... cookies, so make sure you also get in your fruits, veggies, and whole grains.
Here's to health eating and feeling great!

Carla Ulbrich
The Singing Patient, author of "How Can You NOT Laugh at a Time Like This?"

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

www.youtube.com/user/carlaulbrich- funny medical songs

get the book! http://tinyurl.com/348hroc

Great Resource for Lupus info and Support

On October 8, I attended and performed/ spoke as The Singing Patient for the Lupus Summit in Charlotte, NC.

Room full of Lupus Thrivers and their loved ones

I had the pleasure of meeting a bunch of other fabulous lupus patients, and I was doubly impressed. First of all with the patients, and second, with this incredible chapter of the LFA.

The patients. Lupus patients are real survivors. The indignities we tolerate are too many to mention. The chronic pain, the years of being told we're imagining our problems, the disfiguring side effects of the drugs, people telling us we are sick because we have sin in our lives, or they ask weird questions like "isn't that AIDS?".. or they suggest that maybe we'll get better if we get pregnant (never mind that I wasn't married when someone suggested that, and I certainly had no energy to raise a child, AND it turns out pregnancy can actually trigger lupus or make exiting lupus worse- UGH!).

This is a chronic disease, so we're looking at a lifetime of more of these indignities.  It's one thing to survive a plane crash, or any other event that happens in an instant and then is over. That is remarkable and worthy of celebration. But it is another thing entirely to survive day after day and year after year of struggle with illness.

That kind of struggle changes you profoundly. And hopefully for the better. And this, if you survive it all, can make you into a very interesting, strong person, often with a twisted wicked sense of humor. And that is what I love about my fellow lupus patients. The strength, the resolve, and the humor. We are true survivors.

These are the kind of people I met at the Lupus Summit. Women who have been abandoned by loved ones, who have survived multiple miscarriages, stroke, organ failure, and more, and who have often gone on to make their lives better because of these difficult events.

The LFA Piedmont Chapter. 

with Christine John Fuller

When I first went to a support group in 1994, I was depressed by it. It was full of people who were in pain, unhappy, and had no hope. And the moderators shut down any talk of alternative medicine, or even working through emotions. All we could talk about was prednisone and disability lawyers. Thankfully, I decided to look elsewhere, because I did not want to end up in a wheelchair getting all my bones replaced after settling for prednisone as my only course of action. And I found a lot of things that helped me to get back off the prednisone and stay well.

And now, all this time later, I'm happy to say that support groups have changed a lot in 17 years. I'm particularly impressed with the open dialogue, the talk of self-care and dietary changes, and the responsibility I see patients taking for their lives. We can get our dignity back, and reclaim much of our health.

The Lupus Summit is ridiculously cheap- only $15 to attend!! and happens annually in Charlotte, NC. And if you're too far away to attend, you can watch videos of many of their presentations online for *free*. They are archived here (my talk will be archived here eventually, too):
http://vimeo.com/28278431

Kudos to Christine and Elaine for running a stellar chapter of the Lupus Foundation of America. You are making a difference, and I hope other chapters will follow your fantastic example.

with Elaine Neilson

Carla Ubrich, The Singing Patient

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

www.youtube.com/user/carlaulbrich- funny medical songs

get the book! http://tinyurl.com/348hroc

Guest post: Lupus and MS

Multiple Sclerosis and Lupus: The Connections

Today we have a guest blogger, Chipper Nicodemus, writing in on the topic of the commonalities between Lupus and MS.

What is Lupus

Lupus is a chronic inflammatory autoimmune disorder that affects the skin, joints kidneys and other organs. An autoimmune disorder is a condition in the body where the immune system incorrectly and mistakenly attacks and destroys the good, healthy body tissues. Lupus is one of more than 80 autoimmune disorders. 

Causes and Risk Factors of Lupus

The exact cause of Lupus isn’t known, but some researchers believe that the disease occurs after an infection with an organism that looks like a mistakenly identified protein and wrongfully is then attacked. In a normal body the immune system’s white blood cells usually protect from the harmful substances, but in a person with Lupus the white blood cells are mistakenly attacked. This happens because the affected immune system cannot tell the difference between healthy and harmful cells. Women are nine times more likely to get lupus than men.

The Treatment of Lupus

The main goal of treatment of lupus is to reduce symptoms, and control the autoimmune process all while keeping the body’s ability to fight the disease. There is no cure for Lupus, but anti-malaria drugs are used to battle skin and arthritis symptoms. More severe or life threatening symptoms, such as heart or lung issues, require treatment with stronger medications in the form of various immune suppressants.

What is MS

Multiple sclerosis, like Lupus is an autoimmune disorder, affects over 300,000 Americans and is a chronic central nervous system that affects the brain and spinal cord. Each MS symptoms can last for days, weeks or sometimes even months and there are periods of reduced or even luckily no symptoms.  Some of the more common symptoms are loss of balance, muscle spasms and even problems walking, but even extend to sexual problems, incontinence and speech problems.

Treatment of MS

Similar to Lupus, there is no cure for multiple sclerosis, but there are therapies that can slow the disease down. The goals of the treatment of MS is to control the symptoms and help the patient keep a good quality of life. Different types of medications are used to slow the progression of MS and can be taken for longer periods of time. There are medications that reduce muscle spasms, reduce urinary problems and sometimes antidepressants are prescribed for mood or behavior symptoms.

How Lupus and MS Relate

There are several similarities between Lupus and MS, including many key symptoms and affects. Sometimes Lupus can mimic the symptoms of Multiple Sclerosis and only a doctor can correctly diagnose one or the other. The following list are some examples of how Lupus and MS relate.

• Autoimmune disease

• Onset in early adulthood

• Women more likely affected (90% of lupus patients and approx. 85% of MS pateints are women)

• Chronic disorders

• Treatments ease symptoms rather than cure

• No cure

Do you have MS or Lupus or know any family members or loved ones that do? Please feel free to share your experiences below in the comments.

This guest blog post was written by Chipper Nicodemus, an SEO Assistant at Healthline.com. Healthline Networks has extended its health search technology services to include specialized health tools that address the patient pathway – from symptoms to treatments, to doctors, to medications.

Healthline Networks, Inc. • Connect to Better Health

www.healthline.com

Comment From Carla:

It is interesting to note that you can have both lupus and MS. There’s no rule saying you can only have one autoimmune disease, or even just one disease. I know someone who has lupus and cancer. I myself have 3 autoimmune diseases (lupus, Raynaud’s, Sjogren’s) and fibromyalgia.

What is interesting to note is the commonalities amongst autoimmune diseases and the strong trend towards their mostly affecting women, and mostly women between 20-40. For thoughts on the gender issue, see my previous post on that topic here:  http://lupusandhumor.blogspot.com/2011/09/why-do-more-women-than-men-get.html

Carla Ulbrich, The Singing Patient

_____________

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

www.youtube.com/user/carlaulbrich- funny songs

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin 

get the book! http://tinyurl.com/348hroc