Both with policy and innovation, we need to remember that patients are our priority.
There have been a lot of great advances in medicine in the last few decades, including exciting developments in the treatment of RA. To me, one of the best changes is that patient voices are being heard. I think part of this is that there is so much quality information available at the patient level and that this empowers us to be a more proactive partner in our health care. Studies such as the one on PASS provide the added clinical evidence that our voices are valid.
Read the rest of the article here: https://rheumatoidarthritis.net/living/patient-assessment-used-as-a-clinical-objective-really/
On Thursday, April 13 at 7 pm ET, Megan Starshak (@TheGreatBM) and Keri Ann Flaccomio (@keriannecdotes) will host the first #FinelyTuned Twitter chat, “Being Your Own Advocate in Treatment Decisions,” with special guest Aimed Alliance (@aimedalliance), a non-profit organization committed to improving access and transparency around quality, patient-centered health care. To participate in the conversation that evening, all you have to do is follow the #FinelyTuned hashtag on Twitter.
It seems that having a chronic disease comes with a hearty side dish of guilt — for not being able to do things, having to cancel activities, or otherwise disappointing those around us. You need to give yourself permission to do the things you need to do and NOT do the things you are unable to.
Read the full article here: https://rheumatoidarthritis.net/living/give-yourself-permission/
Mobile technology seems to have revolutionized our lives and certainly medical apps are some of the most popular. RheumatologyNetwork.com has reviewed the top 19 apps for tracking RA symptoms. (The slideshow rating each app is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/review-ra-mobile-apps-meeting-some-needs-missing-mark-others and the related story/synopsis is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/ra-mobile-apps-meeting-some-needs-missing-mark-others?GUID=1F23207F-2112-4CD6-9E2A-6B74F5025767&rememberme=1&ts=04042017.)
The review included two broad areas. The first, predictably, was what disease activity could be tracked/assessed. The other was the Mobile App Rating Scale (MARS) which includes engagement, functionality, aesthetics and information quality — basically how the user interacts with the app.
I applaud the availability of these apps partly because RA is so unpredictable that it is great to have something at hand with which to track what’s going on and then be able to discuss this information at a later date with your doctor. One of my favorites, Creaky Joint’s (www.creakyjoints.org) Arthritis Power, was the only one that included both ACR and EULAR laboratory measures.
That being said, there appears to be room for improvement on all of the apps, but there are some great contenders to help us on a daily basis. I should note that this is a New Zealand study, but all the apps are available in the US.
I encourage you to view the slideshow or read the story (or both). However, here is a synopsis excerpted from the article:
- 14 apps included at least one validated instrument measuring RA disease activity.
- 11 apps allowed users to enter a joint count and seven of these used the standard 28 swollen and tender joint count.
- 8 apps included at least one ACR and EULAR-recommended RA composite disease activity (CDA) measure.
- 10 apps included data storage and retrieval.
- Only 1 app, Arthritis Power, included both an RA CDA measure and tracked data, but this app did not include the standard 28 tender and swollen joint count.
- The median overall MARS score for apps was 3.41/5. Of the six apps that scored at least four out of five on the overall MARS rating, only one included a CDA score endorsed by ACR and EULAR, but this app did not have a data tracking function.
I hope that however you track your RA activity, that it too low to track today. Thanks for checking in.
If you write at all, you will find that you have some pieces of work that you like more than others. They are more fun or more meaningful or compelling than some other things you’ve written. Or you just like them better. I was looking for something completely different and I ran across this post which is truly one of my favorites. Please forgive me for recycling it, but I hope you enjoy it as much as I do.
This morning there was a news story about a “Rules for Kids” book that was compiled by two young girls who both had younger sisters with which to contend. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down. What a wonderful way to express the old saying of Proper preparation prevents p— poor performance. (I guess it’s the “Everything I need to know I learned in kindergarten” approach.)
At any rate, it got me to thinking about rules to live by for people with RA. We all have them and, like parents with a new baby, when you’re first diagnosed, it would be nice to have an instruction manual.
Here are my top 10 rules. Feel free to share your own. Thanks for checking in and don’t forget to tie your shoes!
- 1. Remember, it’s a diagnosis, not a death sentence. Many, many people with RA live full, productive lives.
- 2. Do your research, but don’t panic. Thanks to the Internet, there is a wealth of information about the disease from medical sites as well as real-world patients. Learn what you can, but understand that each situation is different and that the worst-case scenarios are just that: “worst case”. There is no pre-defined path for disease progression or even medical treatments.
- 3. Find a rheumatologist that you trust and with whom you can communicate. Don’t be afraid to change rheumatologists if you feel that your concerns are not being addressed. Your future treatment options and well-being are in this person’s care so it’s important you find the “right” doctor. Once you find that person be clear about your health and concerns. S/he can’t help you if you aren’t honest about how you’re doing.
- 4. Give yourself permission: permission to not feel your best, permission to not always do everything, permission to let your body rest when it needs it, permission to live your life to the fullest extent possible.
- 5. Don’t give up. RA will be part of your life going forward. If something isn’t working for you, try another treatment option or augment what you’re doing with other therapies such as physical therapy, massage, etc.
- 6. No one is perfect, but we can all be better. Do the best you can for yourself. Stress, unhealthy food, lack of sleep, and lack of exercise can increase your inflammatory response. Limit those factors and triggers. Make “being healthy(ier)” part of your every-day life.
- 7. Enjoy your life. It’s easy to be overwhelmed by a chronic disease. Sometimes it takes a conscious effort to count your blessings and revisit those things that make you smile. Always keep your sense of humor.
- 8. Share your burden. You’re going to need the help and understanding of your family and friends. They can’t be there for you if you don’t share your needs. Seek out a support group — either in person or any of the wonderful resources on the Internet.
- 9. Take one day at a time. Every day will have its challenges and rewards. RA can turn around 180 degrees in a matter of minutes. Do what you need to and can for today and worry about tomorrow when it comes.
- 10. Tie your shoes or you’ll fall down. In other words, be prepared. Your life will be filled with unexpected challenges. You need to do the best you can for yourself in order to meet them. Take your medications, get your rest, talk to your doctor, share with your friends and family. Then if you need a “Plan B” or if you actually do “fall down”, you’ll be in the best position possible to recover.
There is a lot of discussion in the RA community about diet. Some people report that avoiding certain foods like gluten helps keep the disease under control. Others point to having certain foods such as alcohol or sugar as sure-fire ways to induce a flare. There are a number of published diet plans that promise to reduce inflammation and, therefore, calm or even cure diseases like RA, psoriasis, and lupus.
I, personally, have never been able to link what I eat to how my RA reacts.
While there is a lot of science supporting the connection between a person’s digestive system and inflammation, I, personally, have never been able to link what I eat to how my RA reacts. I was, therefore, more than a little interested when I read a report that demonstrates a link between diet and early-onset RA in women. In this case, early-onset applies to women 55 years or younger.
Read the rest of this story here: https://rheumatoidarthritis.net/living/healthy-diet-early-onset-ra/
Methotrexate (MTX) is an accepted first-line drug for patients diagnosed with RA. Oral MTX was what my rheumatologist started me on after my diagnosis. For various reasons, the main one being I hated the side effects and I refused to take it, I was soon switched to my first biologic. However, researchers are now asking if this well-known and affordable drug is being used to its full potential.
Read the rest of this article here: https://rheumatoidarthritis.net/living/methotrexate-under-utilized/