What got you here won't get you there - Vasculitis Foundation · What got you here. won't get you there. Jennifer Gordon, Ph.D. Disclosures. Research in my laboratory is currently

What got you herewon't get you there

Jennifer Gordon, Ph.D.

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

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 BURN

THE FROG

VS

Step 1: Getting a diagnosis – this is the hard part, right?

Step 2: Treatment

Step 3: Remission!!

EGPA Diagnosis10/08/14

• • • • • • • • • • •

B.C.(before Churg-Strauss)

A.D.(after diagnosis)

Do you remember your vasculitis "anniversary"?

•

••

•

••

••

• sinusitis• chronic headaches

• adult-onset asthma

• lung problems(bronchiectasis)

• vocal cord paresis

• purpura• peripheral neuropathy(hands and feet)

•

• 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:

Step 1: Getting a diagnosis

Step 2: Treatment

Step 3: Remission!!

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

Things they don’t tell you

This could take a while...

Sometimes you need to modify your expectations

My credentials: Treatment from Oct 2014 - July 2019

1. Vasculitis

2. Prednisone

3. Me?

Who is driving the bus?

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 diagnosis

Step 2: Treatment

Step 3: Remission??

(remission = no disease activity)

Things you should know

You are the expert of you.

Patients know more than they think they do.

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?

















• reduce prednisone!



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

Where do you want to go?

What are your goals for this conference?

• 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?

Special message to newbies and introverts

Just walk up to someone and say hello!

Things they should tell you, but usually don’t

There are always more treatment options...

What got you here won't get you there - Vasculitis Foundation · What got you here. won't get you there. Jennifer Gordon, Ph.D. Disclosures. Research in my laboratory is currently

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