837 posts in the category “Openness”

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: 

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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5 tips for practicing self-care when your chronic illness is trying to take over

Posted August 14th, 2017 by

As a woman with bipolar disorder I and PTSD, I can pretty safely say that no two days are the same. There are days when the world is sunshine and roses; life is grand! Then there are days when the inside of my brain is trying to run the show without me, and it’s leaving a trail of destruction in its wake. There are floundering relationships, self-harm incidents, and half-hatched big plans laying strewn about, and I stand in the middle of it all, trying very hard not to let the illness win.

When I can really stand back and take stock of things, I find that self-care is paramount to my feeling better, or simply not getting worse. The following are some of my “go-to” self-care strategies.

1. Coloring. I know, I know. You’re already rolling your eyes at the screen, wondering what the heck I’m even talking about. But coloring has turned out to be a Zen activity in my life. My manias are not euphoric, but angry and aggressive, and I have found the act of coloring to bring me down in the moment.

It’s also extremely helpful with my anxiety and PTSD symptoms. We’re lucky that the adult coloring movement is upon us, so you can go anywhere and find books and pencils and markers for very little money.

2. Singing. This strategy is actually backed by science. More and more studies show that the act of singing (in the shower, in the car, on a stage) helps to bring a person calm and joy. Non-judgment is the key: find an album or song list you like (vinyl or online), throw it on, and start singing. It can be of any genre of music, any artist, any arrangement. All that matters is that you sing with abandon!

3. Massage. This is a once-in-awhile self-care treat for me. If I had the money, I’d get a massage every week. But I don’t, so I try to do this for myself once every few months. Massage has been used as a relaxation and health treatment for thousands of years, and there are myriad reasons why — but the bottom line is, it makes you feel good! I know many people with chronic illness of all kinds who make sure they put time aside for massage on a regular basis.

4. Journaling… outside. Anyone who’s been treated for a chronic illness for a while probably wants to scream every time someone says “Have you tried journaling?” No, I’ve never heard of this. What is it? Ugh.

All sarcasm aside, though, journaling in the outdoors when I can, or if I’m really not feeling well, has been incredibly helpful for me. The outdoors make you feel like you’re a part of something more, if you want to, or that you’re the only person in the world, if you want to. It’s really all about how you want to take the best care of yourself at that time.

Also, just like in coloring, the actual physical act of writing can help to bring calm and focus. Write a journal entry, write a thank you note to a friend, or write your grocery list for next week. Content matters less than the fact that you’re writing for yourself in the great outdoors. Put a lawn chair out in the backyard, find a nice park with lovely-smelling flowers, or float in your pool with a trusty notebook and pen! (If you’re from the Boston area like me, I’d suggest this activity be taken indoors December-March, unless you really like snow.)

5. An ingestible treat. Self-care is really about utilizing the five senses in an attempt to make you feel better, or at least to bring you to a more manageable spot until you can talk with a doctor or therapist. I have a short list of things that smell and taste good that I make myself (or ask for). Really good coffee or a chai latte are at the top of the list. Being able to hold a warm cup, smell something wonderful, and then take time to taste that wonderful thing involves three senses in a matter of seconds.

These are just a few tools that anyone can use to help make things a little better in the moment, or to be consistently good to oneself. Sometimes one tool on its own is enough, sometimes a few need to be combined. I have a little list on my refrigerator so that when things get bad, I have it in front of me and can start caring for myself.

What’s on your list? How might you practice self-care today?

On PatientsLikeMe

Thousands of members are sharing what helps them manage their mental health and other conditions – from coloring and journaling and to massage and outdoor time. Join today to learn more about self-care and treatments!

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