15 posts from February, 2011

Rare Disease Day 2011: “Rare, But Equal”

Posted February 28th, 2011 by

RDD_whiteFor patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t always as easy.  You might be the only patient your doctor has seen with your condition.  Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.

Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.”  At PatientsLikeMe, patients are patients, no matter what their condition.  Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.

So, who do we have sharing information about their rare disease?  To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community.  Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis?  There are 332 patients just like you.  Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).

Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS.  Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another.  (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.)  In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”

There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases.  But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience.  And, that will translate to accelerated research and better outcomes – two things we are hoping to make a little less rare.

PatientsLikeMe member mcotter


What Does It Mean When You Have Cold Legs?

Posted February 27th, 2011 by

Do you wonder if your cold legs could be a sign of something?  Sensations of coldness in the extremities – such as the feet and toes – may be the result of poor circulation, neurological disorders or temperature dysregulation.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, approximately 137 patients report cold legs below the knee.  The majority rate this symptom as either “moderate” (42%) or “severe” (31%).   Interestingly, many of these patients list their primary condition as ALS (Lou Gehrig’s disease) or multiple sclerosis (MS), showing that this disconcerting symptom is common in these two neurological diseases (both of which can impair mobility).

Two treatments that our patients report for cold legs are a powered wheelchair and a handicap/disabled parking permit.  What have you tried?  If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

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Got something you’d like to tell others who are experiencing cold legsJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange support and advice, research common treatments and learn from other patients like you.

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What’s Your Experience with Cetomacrogol Cream?

Posted February 26th, 2011 by

Used to treat dry, sensitive skin as well as eczema and itching, cetomacrogol cream FNA is a mitigating and protective skin cream.  It contains cetomacrogol (an emulsifying agent), cetiol (a fast-spreading dry emollient), sorbitol (a humectant and texturizing agent), water and the preservative sorbic acid.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, over 700 patients report dry skin.  The majority rate this symptom as either “moderate” (35%) or “severe” (17%).   Primary conditions representing include everything from fibromyalgia to depression, showing that this uncomfortable symptom affects all different types of patients.

Only one member currently reports using cetomacrogol cream for dry skin.  Her treatment evaluation of cetomacrogol cream, which she rates as “moderately” effective, notes that “a little bit seemed to go a long way” and that she also used the cream as a facial moisturizer prior to makeup application.  However, she discontinued it after a year and a half of use.

If you’ve tried cetomacrogol cream or another therapeutic skin lotion, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

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Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe


Patient Choices: How Open Are You Now?

Posted February 23rd, 2011 by

youAt PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share.  But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition.  Here’s an excerpt:

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions.

But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

But what do you think about openness?  We realize this is a personal decision that you have to make not only as a member of PatientsLikeMe, but also as part of your everyday life.  Yesterday, we delved into the results from a recent patient poll on how openly you share your diagnosis with various people in your life (Patient Choices: The Shape of Sharing).  Today, we’ll to take a look at how PatientsLikeMe has influenced the openness of patients like you.

In the poll, we asked if you had told more people about your condition as a result of PatientsLikeMe.  32% of you said yes, while 68% of you said no.  Thus, roughly a third of you report that you have increased your level of openness due to PatientsLikeMe.

Those percentages change slightly when you break out the answers by condition.  Nearly half of respondents with ALS/PLS/PMA (42%) and epilepsy (40%) have told more people as a result of people a member of our site, whereas approximately one in four people with chronic fatigue syndrome / ME (19%) and HIV (25%) have shared more.

chart05

So do these findings mean there’s an increase (or bias) in openness activity among the population?  We’ll need to do more rigorous research to figure that out.  According to Alan Westin1 of Columbia, a health social scientist who measures privacy trends among the general public, only 15% of people are “privacy unconcerned” meaning that they are willing to share their health information without fear of discrimination or retribution.  The next 60% are considered “privacy pragmatists,” which applies to people who are willing to share some health information if the benefits are explained clearly and well understood.  PatientsLikeMe may now appeal to privacy pragmatists because of the clear benefits shown from information sharing.

Clearly, social media provides a new method of disclosure, and patients like you everywhere must choose whether it’s right for you.  Is it easier to tell people online instead of face-to-face?  Are there more benefits than risks?  And ultimately, is it better to be open or private?  It’s up to you to make those choices for yourself.

We’ll close with a Mood patient’s experience of how using the site has helped to share more:

“Although I have not created a large number of posts on PatientsLikeMe (PLM), just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PLM allowed me to explore others’ perceptions of their experiences:  Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PLM, made me feel more comfortable discussing my diagnosis away from PLM.”

PatientsLikeMe member bheywood PatientsLikeMe member dwilliams

REFERENCES

1.  Westin, A.  “Americans’ Changing Concerns About Health Privacy.”  As presented at the National Academy of Sciences ceremony.  2008.


Patient Choices: The Shape of Sharing

Posted February 22nd, 2011 by

In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend.  Members on our site may choose to share some of this, but what about some of the less trivial things in life, like your health information?  Is there such a thing as “over sharing?”  And what about your old “networks,” the ones that are now referred to as your “In Real Life” (IRL) relationships?  How much sharing do you do with them?

For anyone with a life-changing condition, the choices you make in telling (or not telling) others about your diagnosis are a big deal.  There can be both benefits and risks to openly discussing your condition, whether it’s on a website, at work or amongst friends.  To find out more, we conducted a poll amongst 3,858 patients with 10 different conditions, including ALS/PLS/PMA (N=429), Multiple Sclerosis (N=436), Parkinson’s Disease (N=580), HIV (N=137), Mood Conditions (N=513), Fibromyalgia (N=1,031), Chronic Fatigue Syndrome / ME (N=129), Epilepsy (N=347), and Organ Transplants (N=256).

How openly have you shared your diagnosis with various people in your life?  This was the focus of the poll.  We asked you to answer this question across seven different networks, including your immediate family, extended family, neighbors, work/school peers, friends from childhood, current circle of friends, and friends/followers on social networking sites such as Facebook and Twitter.  We then asked you how many of those people you’ve told (i.e., all of them, most of them, about half of them, a few of them, none of them, or does not apply to me).

chart04b

The figure above shows you the response from almost 4,000 patients and gives you a sense of the “shape” of sharing in each disease.  Each column represents your personal network (e.g., family); the colorful lines represent your condition (e.g., ALS); and the height of the line represents the mean degree of sharing within a network (e.g., all of them).  So, do you see the lines close to the bottom of the chart?  Those indicate that very few people in those patients’ networks have been told about their diagnosis.

So, what did we find?  First, the most obvious finding is that you are most likely to share your diagnosis with all of your close family (81%), followed by your current circle of friends (51%) and extended family (43%). From there, you’d most likely tell your peers from work or school (29%), your “friends” or followers on social networks (22%), your neighbors (19%), and finally your friends from childhood (16%).  When it comes to your childhood friends and neighbors, the results reveal that you are much more selective about who you choose to tell.  In these categories, the majority (52%) of you indicate that you have told either “a few of them” or “none of them.”

Two conditions (HIV and Mood Conditions) are the least well known among all networks.  For instance, overall results suggest that within a patient’s immediate family, 81% say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in Mood it’s 56%.  The effect is even more pronounced with weaker social ties, such as neighbors; overall, 19% of respondents said that all of their neighbors knew their diagnosis; the same number was 4% in HIV and only 2% in Mood.

We didn’t only analyze the results by condition.  What about age?  We found that older patients were more likely to have told their neighbors or people at work/ school than younger patients.

Perhaps the richest data (still to be analyzed) is the open-text responses that we received about some of the positive and negative experiences you’ve had as a result of sharing their diagnosis. A positive example from a patient with ALS read:

“I was devastated and overwhelmed initially, but after reading reports of other ALS patients on PatientsLikeMe, I realized I was not in this alone and their comments were so encouraging.  They encouraged me to share with others and share the triumphs/and bad days.”

A patient with HIV shared some of the risks behind making the choice to be open:

“There is still a massive stigma that goes with HIV. Disclosing can be incredibly difficult when it comes to who to tell and when. Too many still have major misconceptions about the disease and what it means for both the person that has the disease and the people around them.”

Thank you to everyone who took a few minutes to take our poll.  Tomorrow, we’re going to look at what you said about how PatientsLikeMe has affected your openness.

PatientsLikeMe member pwicks


Are You Taking Asthmanex for Your Asthma?

Posted February 19th, 2011 by

Asthmanex is a brand name for the anti-inflammatory agent mometasone furoate, a corticosteroid used in various formulations (inhaler, intranasal spray or topical ointment) for the treatment of asthma and allergic rhinitis as well as inflammatory skin disorders such as eczema and psoriasis.

A prescription inhalant drug marketed by Schering-Plough, Asthmanex – which is available as a “twisthaler” – is approved for the maintenance treatment of asthma in patients four years of age and older.  A dosage of 110mcg is approved for patients age four to 11, while a dosage of 220mcg is approved for patients age 12 and older.  Asthmanex is not indicated for the rescue treatment of sudden, severe asthma symptoms.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, three patients report using Asthmanex while 27 patients report using a formulation of mometasone.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported mometasone duration amongst current users is two years or more, while the top reasons for discontinuing the mediation include doctors’ advice, expense and “it did not seem to work.”

Wondering about side effects?  Only one patient ranked the side effects as “mild,” while zero patients reported having “moderate” or “severe” side effects.  Check out the three treatment evaluations of Asthmanex and eight treatment evaluations of mometasone submitted by our patients to gain even more insight.

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Have you taken Asthmanex – or another form of mometasone?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

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One for All: A Building of Hope

Posted February 18th, 2011 by

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  Today, we have a very special interview with one of our earliest members with ALS, SmoothS.  We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010.  Along with the interview, below is a video of the grand opening event. Have a good weekend!

* * *

2166 (Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project?
smooths (SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an ALS symposium in the spring of 2007 researching our idea when some people overhead my questions. They introduced me to Barry Berman who explained that he was considering building an ALS specialty residence with his proposed Leonard Florence Center for Living. It was important to me that an ALS Residence be fully automated and offer vent support. He agreed that it would and a beautiful relationship was born.The amazing thing is that we designed and built it in less than 3 years.
2166 (Amy) What was the toughest challenge in building this facility? What are you most proud of?
smooths (SmoothS)It has been one challenge after another but none of them proved exceptionally difficult to solve. Probably the biggest challenge was how to provide universal environmental control from a mobile wheelchair. I knew what I wanted to have but found that it didn’t exist. I found a programmer of home automation software and contracted him to build a comprehensive package based on my design. The system is now called PEAC (www.PEACpc.com) and is already being marketed to other health care facilities and we plan to also make a consumer product. I hope and expect that it will revolutionize the independence for the physically disabled.
2166 (Amy) At the grand opening you said that this was the first of hopefully many rehab centers that you want to be involved with, do you know where the next one is going to be?
smooths (SmoothS) We are having conversations with several cities such as Atlanta and Chicago. I am exploring several options to the model here but insist that any variations still be fully automated and provide vent support to anyone that needs it. I am actively marketing the project to several States and welcome any leads.
2166 (Amy) You are a dedicated member of the ALS community online with PatientsLikeMe and offline with the rehab center, What has that meant to you, to be involved in the lives of fo many people on and offline?
smooths (SmoothS) My work on the ALS Residence has been the most satisfying of my life. Obviously, because I will benefit from the project in a very personal way but I also get to help others at the same time. This would be the perfect job for me even without ALS. I get to utilize my life skills to continue being a productive and involved member of society. That is a lot more than many healthy people can say. I know that the ALS Residence Initiative keeps me focused on what I can do. Similarly, PatientsLikeMe is forum where everyone is equal. There is no disability in cyberspace. My connections to others is what keeps me going so ALSRI and PLM help me much more than I could help other people. I am happy that others may find help or inspiration in my efforts. Life is good.
2166 (Amy) Thanks so much for sharing, SmoothS!


The Social and Emotional Choices You Make Every Day as a Patient

Posted February 17th, 2011 by

The Many Faces of PatientsLikeMe

As David Williams discussed in his blog on Monday, we all have to make choices. And for patients like you living with serious medical conditions, there are obvious treatment and career decisions that you have to make—finding the right doctor, deciding which treatment options to try and determining if it’s still possible for you to work in your current profession or if changing jobs or applying for disability is the next step. Like David’s mother, who has battled cancer three times, many of you report that your condition has significantly altered your career choices.

This got me thinking about the tradeoffs that patients like you have to make in order to take care of your health and conserve energy. Beyond your career path, a number of you have been sharing the ways your condition impacts day-to-day decisions, such as making plans with friends. For many of you, this is no longer an easy thing to do, and it can have emotional repercussions. Will your friends understand if you have to cancel? Will you feel guilty? Overall, how do you balance your desire to stay active and social with the need for flexibility due to unpredictable symptoms?

You’re not alone if you struggle with these lifestyle tradeoffs. Fortunately, there is much to learn from the collective experiences of patients like you. You don’t just talk about your challenges at PatientsLikeMe. You also share your inventive solutions to the daily dilemmas you face. Here are just a few of them:

A New Holiday Tradition
“My family is used to me hosting family gatherings, large meals, etc.  This is a difficult issue for me these days…and yet it seems family members don’t realize how hard it is.  I just come right out with it and say something like:  “Sure wish I could still host Thanksgiving like I used to.”  Actually, last year we had dinner at home, but it was catered by our local grocery store.  They cooked most everything and even delivered it piping hot. It was great!”

The At-Home Get Together
If I’m home I feel much better than if I put myself out there where who knows what may happen. At home I have more energy, and things are easier for me. My best friend may stop over unexpectedly. We’ll talk for hours and I have no problems and love the visit. That same friend will call and say a few people are meeting at a restaurant. Nine times out of 10 I’ll cancel. I may tell myself I want to go, but there’s the ‘unknown’ part I may not want to chance.”

Telling People Right Away
“You can change attitudes by talking to people.  If they decide not to be your friend any longer, it’s their loss, and they really couldn’t have been great friends to begin with.  I had a really hard time talking about [my condition] to people at first  and lost some ‘friends’ when I started talking about it.  But now I tell anyone who will listen and have actually gained friends because I have stood up for myself and would not let my disability define me.”

Backyard Activities, Shorter Trips
“I realize I have limited energy and that activity can worsen my symptoms so I often pick and choose what it is that I’m going to do. I’ve traded in activities like hiking and playing softball and martial arts for backyard or casual bird-watching and I do a little photography but the weight of my camera has become an issue since I don’t drive. I used to shop all day by bus and public transit but now I make shorter trips and sit down a lot or plan a day when I just go to the grocery store and then rest.”

Find the Right Balance for You
“I went on disability about six months ago. I wasn’t performing well at work and it made me feel worthless and stressed out. I just needed to drop some stressors.  Now I go to school. I took two classes and got A’s in both.  This coming semester, I’m taking three classes.  I’m slowly increasing the things I’m responsible for, as I have also found that when I’m doing nothing I get depressed.  It’s just a balance you have to figure out for yourself.

As these stories reveal, patients like you must develop a personalized approach to socializing, activities and family gatherings. At the core for everyone, though, is a series of choices about how you allocate your energy. Did you notice that the condition for each patient was not mentioned, by the way? That was deliberate. The point is that every patient, no matter what condition, faces social and emotional choices every day. What works for one patient may not work for another, but there are universal takeaways whenever patients like you connect with one another.


PatientsLikeMe member kbrigham


The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams


Share Your Experiences with Amox TR K CLV

Posted February 12th, 2011 by

Amox TR K CLV (also known as Amox TR-K, Amox TR-K CLV, Amox TR-K-CLV and Amox TR K CLV 875 125) is an abbreviation for amoxicillin-clavulanate potassium, an antibiotic in the penicillin group that combines amoxicillin and clavulanate potassium.  Due to its expanded coverage, it is often prescribed when amoxicillin resistance is present and patients cannot tolerate alternative treatments.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with prescription drugs, supplements and more, we have three patients who report that they are currently taking Amox TR K CLV while 11 patients report taking another generic formulation of amoxicillin-clavulanate potassium.  Some of the common reasons for taking this antibiotic include sinusitis, sinus infection, ear infection and bronchitis.

What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported dosage is 875mg/125mg twice daily, the most commonly reported cost is “under $25,” and the most commonly reported side effects include diarrhea, nausea and upset stomach.  The majority of patients who’ve discontinued the drug say they took Amox TR K CLV for a month or less, likely for the short-term treatment of an infection.

Here are some highlights from the 24 treatment evaluations our patients have submitted for amoxicillin-clavulanate potassium (aka Amox TR K CLV or Amox TR-K CLV):

  • “Worked great for my sinus infection. Side effects weren’t overly terrible. – Patient who took Amox TR K CLV for sinus infection
  • “My congestion is diminished, but my nose rarely feels completely clear. The sinus headaches usually stop, too.”  – Patient who took Amox TR K CLV for sinusitis
  • “I took each dose with food so as to avoid any upset stomach.” – Patient who took Amox TR K CLV for sinus infection and sinusitis
  • “I would like to warn people who have seizures/epilepsy to warn your doctor about the possibility of having a seizure while on this medicine because my side effect that was seriously bad.  It landed me in the hospital on oxygen and IV because I kept having seizures. Then we found out it was from the medicine.” Patient who reports taking Amox TR K CLV for ear infection

JOIN PATIENTSLIKEME TODAY

Have you taken Amox TR K CLV – or another formulation of amoxicillin-clavulanate potassium?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice, research common medications and learn from other patients like you.

Join PatientsLikeMe


Treat Us Right: The Promise of Patient-Centric Healthcare

Posted February 11th, 2011 by

community-developmentAt PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do.  After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you.

Unfortunately, your needs and opinions often haven’t had the influence on the decision-making processes of insurance companies and pharmaceutical manufacturers.  Medical providers have often underserved you in favor of competing interests and more revenue.

The good news is times are changing.  Your voice, the patient voice, is coming to the forefront, where it should be.  Every day new companies approach us asking, “How can I connect with patients?  I need to know what they think and what they’re feeling.  I want to improve their health outcomes.”  These are the partners we want to work with because they are committed to using your insights to change the very nature of healthcare.  And their numbers are growing.

Here are two examples of how you have already impacted their decisions:

  • How do we make this treatment easy for patients to use? A pharmaceutical manufacturer approached us with several options for a new drug’s packaging.  Over 650 of you spoke up in a survey, picking the most user-friendly choice based on your experience.  Guess which packaging the pharmaceutical company went with?  The one the majority of you liked.
  • How do we help patients distinguish their symptoms? Another pharmaceutical company wanted to help patients like you understand your symptoms better so you could seek appropriate treatment.  By partnering with PatientsLikeMe, they found the solution.  58% (n=221) of patients like you surveyed said that the tools developed by PatientsLikeMe helped you better understand your symptoms and outcomes.  That insight has led to even more projects – and they really want to hear from you now!

Thanks to all of you who gave input in these surveys.  There will be more opportunities to be heard soon, so keep it up.  The world is finally listening!

PatientsLikeMe member AMGraham


Share and Compare: The Launch of Two Medications

Posted February 10th, 2011 by

The launch of a new medication can be a very exciting event.  It can renew hope for a better future and provide proof of the billions spent on research every year.  It can also stimulate a lot of interesting conversation.

Or not.  We’ve learned from you that not every new medication warrants your attention and discussion.  What’s fascinating is learning which ones do and which ones don’t, and why.  We saw a recent example of this on PatientsLikeMe:

medsavb

(In this chart, the medications are called “A” and “B” so, as we continue to observe and research dialogue about these medications, we will not have influenced you in any way.)

This chart shows the volume of conversation about two new medications that were approved by the FDA to treat the same disease.  We studied the time immediately following FDA approval of each new medication to see whether or not patients were talking about them.  Since the drugs were approved at different points in time, we simply shifted them onto a single timeline for head-to-head comparison.

What a difference!  In the first month following FDA approval, you discussed Drug A 67 times but Drug B only 25 times.  Three months later, the difference grew to 402 discussions about Drug A to only 42 discussions about Drug B.

What caused this difference, and why is it so pronounced?  Let’s get the obvious stuff out of the way:

  • There was no major event or change on PatientsLikeMe during this time.
  • The number of patients on PatientsLikeMe was approximately the same when both new medications were approved.
  • PatientsLikeMe was not influencing conversation on either new medication.
  • Neither medication was available for use before month 3, long after the two lines in the chart had separated.
  • Similarly, the companies that developed these new medications did not begin their marketing efforts before month 3.

What this leaves is the new medications themselves.  There must be something different between Drug A and Drug B – could be side effects, could be efficacy, could be something else entirely – that drove the volume of conversation about Drug A only.  PatientsLikeMe will study this in greater detail to understand and illuminate the factors behind this phenomenon.

Why?  Because researchers need to know what you value in new medications.  By listening to your unmet needs, researchers can develop solutions to unsolved problems caused by your disease.  Wouldn’t that get you talking?

This is just another example among many of how you are selflessly giving back and helping advance medicine on PatientsLikeMe.

PatientsLikeMe member cfidyk


Learn More About Your Heightened Sense of Smell

Posted February 5th, 2011 by

The medical term for a heightened or increased sense of smell is hyperosmia.  Also known as olfactory hyperesthesia and hyperesthesia olfactoria, the word “hyperosmia” is a combination of the Greek work “hyper,” meaning “above,” and the Greek word “osme,” meaning “sense of smell.”  Put together, hyperosmia is an abnormally increased sensitivity to smells and odors.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, approximately 100 patients report having a heightened sense of smell.  The majority rate their hyperosmia as either “moderate” (42%) or “severe” (28%).   Interestingly, their primary conditions range from ALS (Lou Gehrig’s disease) to multiple sclerosis (MS) to migraines, showing that this disconcerting symptom can occur for many different types of patients – and not just pregnant women.

Searching for this phenomenon in our forum discussions, several interesting things are revealed.  For example, some patients report that strong smells have triggered their migraines or seizures, while others say their increased or heightened sense of smell is so acute that it’s like “tasting” the odors.  Several patients report experiencing “phantom odors” that no one else is able to detect, and at least one says she started smoking cigarettes to help mask the intensity of smells around her.

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Can you relate to any of these first-hand reports?  These are the kind of insights you can only glean from other patients who are also experiencing a heightened sense of smell. So if you have hyperosmia, and you’d like to learn more about it, join PatientsLikeMe and connect with others like you today.

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One for All: A Cross View of Patient Sharing

Posted February 4th, 2011 by

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

commgraphicToday, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

  • Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
  • Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

What are your major symptoms?

What are you talking about?

  • Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.