Transcription
What got you herewon't get you thereJennifer Gordon, Ph.D.
DisclosuresResearch in my laboratory is currently funded by the National Institutes of Health(NIH) including NIMH, NHLBI, NIA, and NIDAAdvisor, without financial compensation, and research laboratory funding fromExcision Biotherapeutics, a viral gene therapy start-up companyAdvisor, without financial compensation, for the PURA Syndrome FoundationPatient-partner, without financial compensation, for the V-PPRN funded by PCORIPatient representative on EGPA advisory committees sponsored by GSK**Any financial compensation I have received for clinical trials or patient advisorycommittees has been donated to the Vasculitis Foundation
Welcome to Minneapolis!
(Philadelphians LOVE Minneapolis!)
Why are we here?VASCULITIS
Vasculitis – an autoimmune disorder
My immune system has somehow morphed into a superpower.
THE CRASH AND BURNVSTHE FROG
Step 1: Getting a diagnosis – this is the hard part, right?Step 2: TreatmentStep 3: Remission!!
EGPA Diagnosis10/08/14A.D.B.C.(after diagnosis)(before Churg-Strauss) Do you remember your vasculitis "anniversary"?
My organs affectedand my symptoms chronic headaches sinusitis adult-onset asthmablue: affected organsred: other symptoms –difficult to measure lung problems(bronchiectasis) vocal cord paresis hip joint pain eosinophilia peripheral neuropathy(hands and feet) neuropathic painfatiguemalaisepainweakness purpura
For details of my journey to diagnosis:The VF’s Road Map to Wellness Webinar SeriesManaging vasculitis: A patient’s perspectivePresenter: Jennifer Gordon, PhDMarch, 2017
Step 1: Getting a diagnosisStep 2: TreatmentStep 3: Remission!!
The teamMy clinicians Rheumatologist (“head coach”) Neurologist ENT (vocal cord surgeon) Pulmonologist Dermatologist Ophthalmologist Others Me
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
Things they don’t tell youThis could take a while.
Sometimes you need to modify your expectations
My credentials: Treatment from Oct 2014 - July 2019
Who is driving the bus?1. Vasculitis2. Prednisone3. Me?
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 ------------------------------
Step 1: Getting a diagnosisStep 2: TreatmentStep 3: Remission?(remission no disease activity)
Things you should knowPatients know more than they think they do.You are the expert of you.
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
My first clinical trial(randomized placebo-controlled double-blinded Phase III study)
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)
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 ------------------------------
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 ------------------------------Where do I want to go next? reduce prednisone!
Where do I want to go next?
My goals for my first VF conference in 20151. Make it to the conference!2. Meet someone with vasculitis3. Decide how I want to get involved with the VF
What are my goals for this conference?1. Get through my talk2. Decide how can I contribute more to the VF3. Meet Brandon Hudgins
Conferences are my triathalonsThree legs of the trip:1. Travel to meeting2. Survive the meeting3. Make it back home
Where do you want to go?What are your goals for this conference?
Get involved!Pick some areas that appeal to you.Here are some of the things I have been doing: 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
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 biggestimpact in your life right now? what is the one goal you have for this conference?
Special message to newbies and introvertsJust walk up to someone and say hello!
Things they should tell you, but usually don’tThere are always more treatment options.
What got you here. won't get you there. Jennifer Gordon, Ph.D. Disclosures. Research in my laboratory is currently funded by the National Institutes of Health . 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.
