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Disclosures
Research in my laboratory is currently funded by the National Institutes of Health (NIH) including NIMH, NHLBI, NIA, and NIDA
Advisor, without financial compensation, and research laboratory funding from Excision Biotherapeutics, a viral gene therapy start-up company
Advisor, without financial compensation, for the PURA Syndrome Foundation
Patient-partner, without financial compensation, for the V-PPRN funded by PCORI
Patient representative on EGPA advisory committees sponsored by GSK*
*Any financial compensation I have received for clinical trials or patient advisory committees has been donated to the Vasculitis Foundation
EGPA Diagnosis10/08/14
• • • • • • • • • • •
B.C.(before Churg-Strauss)
A.D.(after diagnosis)
Do you remember your vasculitis "anniversary"?
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• sinusitis• chronic headaches
• adult-onset asthma
• lung problems(bronchiectasis)
• vocal cord paresis
• purpura• peripheral neuropathy(hands and feet)
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• hip joint pain
• fatigue• malaise• pain• weakness
• eosinophilia
•
My organs affected and my symptoms
blue: affected organs
red: other symptoms –difficult to measure
• neuropathic pain
The VF’s Road Map to Wellness Webinar Series
Managing vasculitis: A patient’s perspective
Presenter: Jennifer Gordon, PhD
March, 2017
For details of my journey to diagnosis:
The team
• Rheumatologist (“head coach”)
• Neurologist
• ENT (vocal cord surgeon)
• Pulmonologist
• Dermatologist
• Ophthalmologist
• Others…
+ MeMy clinicians
My job in the treatment plan:
• commit to the treatment goal – REMISSION
• commit to the treatment plan
• execute the plan
• make observations, take notes
• report back - give feedback on the plan
• any deviations from the plan?
• what are the clinical changes?
• symptoms, pain, quality of life
• make suggestions for improving the plan
My current treatment plan – 3 immunosuppressants!
• prednisone - 10 mg per day for the last year (YAY!!)
• mepolizumab (for eosinophilia) - 300 mg/month for 3 years
• rituximab (total of 7 courses received so far, next course in August)
• monthly IVIG for peripheral neuropathy (2g/kg over 2 days) for 3 years• --------------------------------------------------------------------------------
And here is some research to back it up:
Patients already know they are having a flare before their doctor knows it.
What does this chart represent to me? Teamwork. This is what patients and doctors can achieve together.
• we have a shared goal
• we stay focused on the goal
• make adjustments to the plan together
• change one thing at a time
• reevaluate
• communication
• trust
Clinical trial results published and drug approved by the FDA
(I was randomized to the placebo group in the trial - I have now been receiving mepolizumab for three years)
My current treatment plan – 3 immunosuppressants!
• prednisone - 10 mg per day for the last year (YAY!!)
• mepolizumab (for eosinophilia) - 300 mg/month for 3 years
• rituximab (total of 7 courses received so far, next course in August)
• monthly IVIG for peripheral neuropathy (2g/kg over 2 days) for 3 years• --------------------------------------------------------------------------------
My current treatment plan – 3 immunosuppressants!
• prednisone - 10 mg per day for the last year (YAY!!)
• mepolizumab (for eosinophilia) - 300 mg/month for 3 years
• rituximab (total of 7 courses received so far, next course in August)
• monthly IVIG for peripheral neuropathy (2g/kg over 2 days) for 3 years• --------------------------------------------------------------------------------
Where do I want to go next?
My current treatment plan – 3 immunosuppressants!
• prednisone - 10 mg per day for the last year (YAY!!)
• mepolizumab (for eosinophilia) - 300 mg/month for 3 years
• rituximab (total of 7 courses received so far, next course in August)
• monthly IVIG for peripheral neuropathy (2g/kg over 2 days) for 3 years• --------------------------------------------------------------------------------
• reduce prednisone!
Where do I want to go next?
My goals for my first VF conference in 2015
1. Make it to the conference!
2. Meet someone with vasculitis
3. Decide how I want to get involved with the VF
What are my goals for this conference?
1. Get through my talk
2. Decide how can I contribute more to the VF
3. Meet Brandon Hudgins
Conferences are my triathalons
Three legs of the trip:
1. Travel to meeting
2. Survive the meeting
3. Make it back home
• attending VF symposia and regional conferences
• attended the 19th International Vasculitis and ANCA Workshop
• participating in research studies and clinical trials
• volunteer on committees as a patient representative/patient partner
• speaking at NIH workshops as a patient advocate
• getting more involved through the Vasculitis Foundation
Get involved!Pick some areas that appeal to you.
Here are some of the things I have been doing:
Forget the big goals and long “to do” lists.
• what is one tiny thing you could do right away?
• what is the one thing that would make the biggest impact in your life right now?
• what is the one goal you have for this conference?