28 posts tagged “side effects”

“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month

Posted April 11th, 2016 by

April is Parkinson’s Awareness Month, and this year we’re getting personal.

Seesawing libidos,” an episode of WBUR Boston’s Modern Love podcast, explores an unexpected side effect of a Parkinson’s medication: an overactive sex drive. The story comes from comedian Marc Jaffe, whose wife Karen was diagnosed with Parkinson’s 15 years into their marriage.

Before Karen’s diagnosis, Marc was the one with the stronger libido, but their roles would reverse after she started her medication. Compulsive behavior was a side effect, and in Karen’s case, it manifested as hypersexuality. Marc shares, “Those pills would change our lives more than Parkinson’s.”

Eventually, Karen was able to channel her obsessive behavior into fundraising and advocating for Parkinson’s. Check out the podcast to hear more of Marc’s reflections on how a medication could affect his marriage in such an intimate way.

Have you ever experienced a side effect that changed your personal life? How did you cope? Jump in the forum and share your story.

 

Share this post on Twitter and help spread the word.


Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

Share this post on Twitter and help spread the word for depression.


Working Together for an AIDS-Free Generation

Posted November 30th, 2012 by

World AIDS Day Is Saturday, December 1, 2012

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”

More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment.

Facing AIDS Is an Ongoing AIDS.gov Social Media Campaign

Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself.

Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects.  From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.

The point is that working together can improve care – and increase prevention.  Join the millions of Americans working towards an AIDS-free generation today.


Strengthen Your Knowledge During National Osteoporosis Month

Posted May 18th, 2012 by

Of the estimated 10 million Americans with osteoporosis – which means “porous bones” – 80% of them are women.  That’s why we wanted to shine a spotlight on this condition during National Women’s Health Week.  Approximately one in two women over the age of 50 will break a bone because of osteoporosis.  Even more alarming is the fact that 24% of hip fracture patients age 50 and older die in the year following their fracture.

Talk to Your Family About Bone Health During National Osteoporosis Month

Now that you know the facts, it’s time to talk to your family about what you can do to prevent this scenario.  The National Osteoporosis Foundation’s Generations of Strength Campaign encourages women (and men!) to start conversations about bone health and family history during National Osteoporosis Month.  Have either of your parents experienced a broken hip, spine or wrist, for example?  What about height loss or a spine that curves forward (two possible signs of broken bones in the spine)?  Research shows that genetics plays a major role in osteoporosis.  If either of your parents has a history of osteoporosis or broken bones, you are more likely to break a bone.

Do You Have a Parent Who's Experienced Broken Bones, Height Loss or a Forward-Curving Spine?  You May Be at Risk for Osteoporosis.

Fortunately, there are preventive steps you can take.  Thirty years ago, osteoporosis was generally considered a part of normal aging.  But today researchers know a lot more about how to protect your bones throughout your life.  For example, getting enough calcium, vitamin D (which aids calcium absorption) and exercise is very important.  Eating fruits and vegetables is also beneficial to bones.  On the other hand, eating poorly, smoking, drinking too much alcohol and not exercising can cause bone loss.

In addition, researchers now have a way to detect osteoporosis before a broken bone occurs.  It’s called a bone density test, and it measures your bone density in the hip and spine.  That’s because fractures in these areas can cause more serious problems, including longer recovery time, greater pain and even disability.  Using a Central Dual Energy X-ray Absorptiometry (DXA) machine, the test usually takes 15 minutes or less.  It is non-invasive and painless.  While it does expose you to radiation, you are exposed to 10-15 times more radiation flying roundtrip between New York and San Francisco.

A Snapshot of the Osteoporosis Community at PatientsLikeMe

If you’re a postmenopausal woman – or a menopausal woman with a family history of osteoporosis or other risk factors – talk to your doctor about whether you should have a bone density test.  Men over the age of 50 should do so as well.  Based on your resulting T-score (the measurement of bone density), your doctor can determine how healthy your bones are and whether you are a candidate for osteoporosis treatments, which can help to improve bone density and even reverse the condition to some degree.  According to the 911 patients with osteoporosis at PatientsLikeMe, some of the most commonly used treatments include Fosamax, Actonel and Boniva.  (Click each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.)

As we wrote at the beginning of the week, women often put their needs secondary to that of their family.  This is an example of how it’s crucial to prioritize your own health.  Because if you break your hip, how well will you be able to care for your family then?


Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


What Do You Know About Thyroid Disease?

Posted January 11th, 2012 by

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

"I Am the Face of Thyroid Disease" Is the Theme of a Campaign Launched to Support Thyroid Awareness Month (Click Through to See Patient Videos and Stories)

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Some of the Commonly Reported Treatments for Hypothyroidism at PatientsLikeMe

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.


Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published

Posted December 22nd, 2011 by

Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting.   In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.)

A Sample Section from the Epilepsy Survey

Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.

Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better?  Share your thoughts in the comments section.

PatientsLikeMe member pwicks


Life with Parkinson’s Disease: What We’ve Learned

Posted December 15th, 2011 by

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Age at Which Patients Experienced Their First Parkinson's Symptom

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.

Some of the Most Commonly Reported Treatments for Parkinson's, As Reported by PatientsLikeMe Members

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.


Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”

Posted December 13th, 2011 by

PatientsLikeMe Member and Parkinson's Blogger Steve Ploussard Doing His Best "Heisman Trophy" Pose

Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment.  Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.”  Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.

1.  What’s it been like “going public” about Parkinson’s on your blog?

Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me.  When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders.  I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease.  I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.

I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years.  It wears on you and can consume you if you let it.  Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family.  The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it.  I use the opportunity to educate that PD does not kill you.  It only makes it more difficult to live a normal life due to the symptoms.

2.  What role does PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS) play in your disease management?

The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD.  I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint.  When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7.  Just before I started to answer this question today, I took the test and scored an 11.  My high was a 22 back in May 2011.

A Sample Section of PatientsLikeMe's Parkinson's Disease Rating Scale (PDRS)

Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come.  The PDRS may not be an exact science, but it does give us a baseline in measuring PD.  Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s).  Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe.  If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.

3.  What’s some of the best advice you’ve gotten from other PatientsLikeMe members?

The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal.  The wealth of knowledge you have at your fingertips is extremely powerful.  If you have PD and are not member, you are simply missing out.  Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.

The following is one example of an experience I had recently with PatientsLikeMe.  At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website.  The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:

Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors.  And now for the 3rd time I am stopping due to the side effects.  For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”

Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance.  J. Marley, Lexiegirl, Parkinson’s Pete and equus, thank you from the bottom of my heart.  I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.

4.  You talk a lot about your fighting spirit on your blog.  Where do you draw inspiration and strength?

Good question.  My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day.  I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work.  I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.

Outside my family, there are three men that I draw inspiration and strength from almost daily.  They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali.  This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer.  I have heard and played the speech so many times I can almost recite it by heart.  The main strength I draw on is what Coach Valvano asked us all to try and do each day.  We need to be deep in thought about something important to us every day.  Each day we need to laugh and enjoy life.  And lastly, each day we need to have emotions that move us to tears.  If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY.  The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).

As we go through life, we all have our heroes we look up to for inspiration.  For me that has changed as I have gotten older and hopefully wiser.  When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus.  In my adult life family members have become my heroes and support as I fight PD and try and live a normal life.  My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.

Boxing Legend Muhammed Ali, Whose Attitude Inspires Steve Ploussard on a Daily Basis

Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years.  Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.”  His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail.  And then there is The Greatest, Mohammed Ali.  My blog’s mantra, “Attitude & Fitness Wins,” says it all.  I draw strength and a confident attitude every time I see it.  His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.

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To find out more about PD, check out our follow-up blog post, “Life with Parkinson’s Disease: What We’ve Learned.”


Spotlighted Blogger: Bipolar Patient Andrea of “Lithium and Lamictal”

Posted December 8th, 2011 by

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

Bipolar Blogger Andrea of "Lithium and Lamictal"

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.


Get “Seizure Smart” for Epilepsy Awareness Month

Posted November 10th, 2011 by

Click Here to Take the Seven-Question Quiz and Get Your "Seizure Smart" Completion Certificate

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.


MS PATIENTS PERCEIVE COPAXONE EFFICACY AND TOLERABILITY AS COMPARABLE TO REBIF AND AVONEX

Posted November 3rd, 2011 by

FOR IMMEDIATE RELEASE

PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications

CAMBRIDGE, MA – November 3, 2011 – In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies Avonex and Rebif.  However, all three medications are perceived as trailing in efficacy and tolerability to Gilenya, Tysabri and Betaseron.  In the report’s analysis of 3,200+ patient conversations about MS DMTs from January-June this year, PatientsLikeMe also finds that Copaxone is perceived as safer than other MS DMTs.

ms-dmts-copaxone-patients-treatments-healthcare-pharma

“Patients’ sharing of their Copaxone experience may adversely affect its demand as a first line therapy since patients are becoming more influential in their treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “What has become clear through these reports is that real-world evidence will have a major impact on relative pricing for MS DMTs and play an increasingly important role in access decisions.”

This 46-page report – entitled “Does Copaxone patient experience in the real world justify its value?” – quantitatively and qualitatively analyzes 4,100+ MS patients with experience using Copaxone.  Other report sections include:

  • The Patient Voice in Treatment Discussions: Copaxone was discussed in 25% of all patient conversations about MS DMTs.
  • Copaxone Efficacy and Side Effects: Of the 1,100+ MS patient evaluations on Copaxone’s efficacy and side effects, 30% reported experiencing “moderate” to “major” efficacy, while 26% reported “moderate” to “severe” side effects.
  • Copaxone Price vs. Value: Is this medication appropriately priced compared to other MS DMTs given real-world evidence regarding efficacy and side effects?

The report is available for purchase at http://partners.patientslikeme.com/copaxone-report; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon


TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE

Posted September 22nd, 2011 by

FOR IMMEDIATE RELEASE

TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE

PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs

In the first report of a series on Multiple Sclerosis (MS) disease modifying therapiestysabri(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report — titled “Does Tysabri patient experience in the real world justify its value?” — analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

  • Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
  • The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
  • Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report is available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter and the PatientsLikeMe blog.]

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PatientsLikeMe member lscanlon