Joint_Decis_4CCreakyJoints launched an interactive program in conjunction with Janssen Biotech, Inc. to help patients with moderate to severe rheumatoid arthritis become more present in their own care.

The first chat, called “It Takes Two: Working With Your Rheumatologist to Manage Your RA” featured Dr. Laurie Ferguson (a health psychologist) and Matt Iseman (an RA patient, stand-up comedian).

The discussion was robust and important. As most of us with RA know, diagnosis is difficult. For Matt, it took 1.5 years for him to receive his RA diagnosis. And as part of the interactive polling during the chat we learned that 44% of participants said it took them longer than one year to get an RA diagnosis. Imagine the better outcomes we could have if we get diagnosed earlier?

For those of you who couldn’t attend here are some highlights:

  • Tracking – Matt suggested tracking symptoms and other pieces of data that you could then share with your doctor. Both Laurie and Matt stressed that the relationship between you and your rheumatologist is a partnership, and both the patient and the doctor should be held accountable.
  • Information – Another key piece of advice was that having information is powerful, and being an informed patient is extremely important.
  • Be prepared – Come to your appointments with a plan, both long term and short term. This will help guide your appointment and provide information to your doctor about what is important to you.
  • Be your own best advocate – The consensus seems to be that if the relationship between you and your rheumatologist is not working, you should definitely make a change.
  • Healthcare team – Matt said that if you live in an area where a rheumatologist isn’t readily available, it’s worth traveling to see one. While it’s up to you who your main doctor is, a rheumatologist is a key member of the healthcare team for anyone with rheumatoid arthritis.
  • Internet – If you are not finding answers from medical professionals, one place to turn is the robust RA community that exists online. Not only can you find information, you can also find help and support from fellow RA sufferers. CreakyJoints.org is a great resource.

Finally, Matt had some poignant advice:

1) RA is part of who you are, but it does not define who you are.

AND

2) Don’t let RA run your life. Run RA.

Want to learn more? There are three more webinars in the Joint Decisions series:

October 15, 2014 – “Know Your Options: Making Informed Decisions About RA Treatments”
November 4, 2014 – “Benefit From Your Benefits: How to Make RA Treatment More Affordable”
January 4, 2015 – “Right Track RA: Helpful Tips for Continued Success in the New Year”

All chats are from 7:00 p.m. to 8:00 p.m. EST.

For more information and to register, visit CreakyJoints_JointDecisions.

* It is important to note that these chats are not a substitute for medical advice. Always talk to your doctor before making significant changes to your treatment regimen.