1131 posts by patientslikeme

75k [virtual] hugs on PatientsLikeMe – and how social connections are good for your health

Posted August 22nd, 2017 by

Newsflash: “Social Interaction Is Critical for Mental and Physical Health,” as The New York Times recently reported. Decades of research support the theory that social connections can have a positive effect on your health. Having social ties may help prevent illness and is still a boon to your health when you’re sick or living with a health condition. Check out some of the research and see how members are supporting each other socially on PatientsLikeMe.

What’s the science behind social connections?

As the Times reports, a 2001 study found that people with coronary artery disease who’ve had a heart attack have a lower risk of another cardiac arrest if they’re more socially connected. Other studies have shown that social interactions and support may help with everything from wound healing and physical pain to mood and psychological symptoms.

Researchers who’ve studied the benefits of social interactions for women with breast cancer have found that receiving social-emotional support may reduce stress and affect the body’s “HPA” axis (or hypothalamic-pituitary-adrenal axis – that’s a mouthful). Basically, the HPA axis uses glands, hormones and nerves to help regulate several processes in the body: stress response, immune and digestive systems, mood and emotions, sexuality and energy storage.

Studies show that “instrumental support” (like in-person assistance with getting to appointments and taking medications) is helpful to people with health conditions, but some researchers say that “social-emotional support” (connecting face-to-face or online) is critical in disease management. Another New York Times article notes that long-distance friendships are beneficial, and “in many studies, friendship has an even greater effect on health than a spouse or family member.”

Here for each other – on PatientsLikeMe

Many PatientsLikeMe members arrived here because of their diagnosis – but they’re discussing more than their health on the site. Many build a virtual network of comrades with whom they chat or check in about their weekends, birthdays, holidays, hobbies and more. For some people, having a health condition may make it harder to get out and socialize face-to-face, and for others, an in-person network of “normals” (people without health issues) doesn’t always get it.

Here are some stats about non–health-related exchanges on PatientsLikeMe:

  • 8,372 “happy birthday” posts
  • 8,209 “here for you” posts
  • 4,921 “happy for you” posts
  • 3,144 “Merry Christmas” + 950 “Happy Holidays” posts
  • 6,126 “this weekend” + 570 “your weekend” posts
  • 2,254 “how are you doing?” + 1,256 “how are you feeling?” posts
  • 2,229 “I hear you” posts
  • 866 “made my day” posts
  • And, finally… 75,553 “hugs”

Let’s talk (OT)!  

Just to name a few “off topic” (“OT”) discussions on PatientsLikeMe…

  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • In the MS forum, members play “Ask the next person a question” and all sorts of word games.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • “Potpourri” and family photos threads in the ALS forum have been go-to places to share about non-ALS stuff.

What would you like to chat about? Join the community today and click the green button to “Start a new topic” like the ones above (or whatever you can think of!).

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Want to know more about Radicava (edaravone)? Here’s a snapshot:

Posted August 17th, 2017 by

With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team – as always, talk with your physician before starting any type of new treatment.

Radicava: The quick hits

  • Radicava works as a free radical scavenger.
  • When free radical (toxic by-products of cells that are highly unstable and reactive) levels are too high, cells are damaged resulting in oxidative stress (which may damage motor neurons). The way in which Radicava works to help patients with ALS is not fully understood yet; however, researchers believe that by getting rid of these free radicals it can help prevent some cell damage.
  • In clinical trials, treatment with Radicava was found to slow the decline in functional disability as measured by ALSFRS-r scores for some patients. However, it is important to note that Radicava does not stop the death of motor neurons (it’s not a cure).
  • Radicava may be taken in conjunction with riluzole (consult healthcare provider).
  • Radicava is administered intravenously (60 mg IV over 60 min) daily for 14 days, followed by a 14-day drug-free period. Subsequent cycles are administered daily for 10 days over a 14-day period followed by 14-day drug-free periods. Because this drug is meant for long term use, patients will need to have a peripherally inserted central catheter (PICC line) or some other kind of catheter installed.

Clinical trials and FDA approval

  • FDA approval for Radicava was based on a Phase III clinical trial conducted in Japan only in Japanese patients. Patients enrolled had to have ALS for less than two years, have normal respiratory function as well as the ability to complete most activities of daily living.
    • Radicava may be processed and function differently in different patient populations. Post marketing data will be important for determining the effects and impact of the drug in patients other than those who participated in the clinical trials.

Side effects and reactions:

  • The most common side effects reported in clinical trials include bruising, problems walking (gait disturbance), and headache.
  • Hypersensitivity reactions:  Radicava may cause allergic reactions that could happen after the infusion has finished.
    • Symptoms to watch for: Hives, swelling, dizziness, wheezing, shortness of breath, itching, and fainting.
    • If you’ve experience allergies to other medications before, inform your healthcare provider.
  • Sulfite allergic reactions: Since Radicava includes sodium bisulfite as an ingredient, those with sulfite allergies should be cautious when taking this drug.
    • Those with asthma have a higher risk of developing sulfite sensitivity. Let your healthcare provider know if you have asthma.
    • Symptoms to watch for: Hives, trouble breathing/ swallowing, itching, swelling, dizziness, asthma attacks (in people with asthma), wheezing and fainting.
    • If you have a sulfa allergy, you may or may not have a reaction to this drug. Sulfa allergies are a result of hypersensitivity to a chemical structure called sulfonamides, which are common in many antibiotics. Sulfites are chemically different from sulfonamides and any reaction to sulfites is not related to sensitivity to sulfa drugs. Both can cause reactions, but they are not related.
  • If you are pregnant or plan on becoming pregnant and/or are breastfeeding, let your healthcare provider know. It is not known if Radicava will harm the baby or if it passes into breast milk.

Availability and access

  • Radicava is expected to be available in August of this year as a brand name drug and it’s estimated it will cost around $145,000 per year in out of pocket costs (does not account for insurance coverage).
  • Because the drug isn’t available yet, many insurance companies may not have developed policies regarding coverage. Different insurance programs will develop such policies of coverage of new drugs at different times.
  • MT Pharma America (MTPA), the manufacturing company for Radicava, has developed a program called Searchlight Support to help people with ALS learn more about this treatment and to help them find and secure coverage through their insurance.
    • Searchlight Support offers out of pocket support options only to certain eligible patients with commercial insurance. Patients with Medicaid, Medicare and other government funded insurance may not qualify.

Interested in learning more about whether Radicava is right for you?

Check out the medication guide and contact the Searchlight Support program to learn more about the potential financial support programs and to find an infusion center near you.

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Disclaimer: At PatientsLikeMe, we’re all about transparency, so please keep in mind that this piece is solely to provide a snapshot of Radicava so you can stay informed and make better decisions with your care team. This content isn’t sponsored and we don’t have a financial relationship with the drug manufacturer.