5 posts tagged “treat us right”

Patient Interview: “A Sense of Togetherness, Love and Unity”

Posted December 17th, 2010 by

This week’s “Treat Us Right” theme focused a lot on the sentiments and data you share every day to help others learn more about your real-world experiences.  We, at PatientsLikeMe, also like to just check in to see how you’re doing as a person, not just a patient.  Here’s an interview with member “jesus reigns,” a member of our PatientsLikeMe Fibromyalgia Community who was interviewed for last month’s newsletter.   Read on to learn more about what puts a smile on her, her attitude on life, her favorite holiday traditions and more. Enjoy!

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2166 (Amy) What puts a smile on your face?
mama-full (jesus reigns) My children, my church family and the holidays.  Christmas is my favorite holiday, so I get to enjoy all of those things at the same time.  I am very sentimental, so it doesn’t take much for me to get emotional.
2166 (Amy) How would you describe your attitude on life?
mama-full (jesus reigns)
My attitude on life has changed quite a bit since I became ill with fibromyalgia.  I used to think that everything had to be done each day, just so.  I was a master in multi-tasking and could get by on six hours of sleep a night.  I would take on more and more tasks outside of the home, church assignments, school activities and so on.  My day was always full of things to do, and not enough time in which to do them.  I used to feel guilty when I couldn’t fulfill all of my obligations to everyone, and try that much harder to please everyone.

Now, my attitude is that life is meant to be enjoyed, not worked through.  I have learned to delegate tasks around the house to my children, instead of trying to do it all myself.  I cut down on my outside activities drastically, even having to drop out of our choir in church for a while.  I am still learning how to pace myself, and to understand that being ill is not my fault.

In knowing this, I am past feeling guilty about the things I can’t control.  Because God is my priority, my trust and help lie in Him, so I am taking life as it comes, while my faith is in Him.

2166 (Amy) What is your favorite holiday tradition and why?
mama-full (jesus reigns) Christmas is on the top of my list.  My favorite holiday tradition is my family and I going to our candlelight services at midnight at our church on Christmas morning.  We usher in Christmas by singing Christmas songs and lighting candles in a circle around our church, each member holding a candle.  It is our way of putting Christ first for the day, and acknowledging that this is our first priority.  It gives us a sense of togetherness, love and unity.
2166 (Amy) What features of PatientsLikeMe do you use most?
mama-full (jesus reigns) I use the update pages the most.  It is very handy, because I can keep track of my symptoms whenever I want to.  I also like the way that I can use this to print off [my updated history] for my doctor’s appointment.
2166 (Amy) Thanks so much for sharing, jesus reigns!

Treat Us Right: Comparing Cymbalta and Lyrica in the Fibromyalgia Community

Posted December 16th, 2010 by

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia.

PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned:

  1. Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.
  2. efficacy

  3. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.
  4. sideeffects

  5. Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.
  6. weightgain

So what makes this data interesting?

  • There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them.  Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.
  • This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients.  Additionally, you frequently report experiencing little to no efficacy on either treatment.  One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.
  • This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials.  However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches.  By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe.  It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.

Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe.  You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.

You keep on saying it and we’ll keep on relaying it:  Treat Us Right.

PatientsLikeMe member cfidyk