- I never had to convince her that Sjogrens is a serious disease (she already knew that).
- She was the captain who steered my ship-of-doctors in the right direction for my medical care whenever a new concern developed.
- I was encouraged to face my denial when I was more ill than I wanted to accept, so I could make better choices.
- She introduced me to the Sjogrens Foundation and supported my Board seat. This has been a role that has given me great pride and fulfillment.
Farewell Dr. Carteron, but not Goodbye!
Sjogrens Syndrome Foundation
- I continue to be the Rheumatology Chair for SSF Clinical Practice Guidelines Initiative Phase 2. We have Pulmonary (Rheum and Pulmonologists); PNS (Rheum and Neurologists); CNS (Rheum, Neurologists, NeuroOpthalmologist, Neuropsychologists, and Psychiatry) Topic Review Groups launched, and we are approaching the literature search and data extraction phase. Lymphoma (Rheum and Heme-Onc) and Vasculitis (Rheum and Autoimmune Derm) group members have been recruited, and we will launch those groups soon. Thank goodness for Kathy Hammitt, who is the lead SSF staff! This initiative leading to publication in peer-reviewed journals will likely be a 1.5 to 2 year commitment. It is fully funded by the SSF, brings together Sjogren’s experts from throughout the US, and is unique among similar foundations.
- I will remain as Medical & Scientific Editor of the Sjogren’s Quarterly, will participate in reviewing all the Sjogren’s related research abstracts selected by the ACR (American College of Rheumatology), and will participate in the SSF Clinical Trials Consortium and Giving Health programs.
- The ISSS (International Sjogren’s Syndrome Symposium) will take place in DC in April 2018 and I am on the Steering Committee.
- I was invited to contribute an audio-slide talk on Sjogren’s which served as the basis for a book chapter being co-authored by Dan Wallace with colleagues from the Netherlands. The topic is on the Clinical Aspects of Sjogren’s in Dubois’ Lupus Erythematosus and Related Syndromes, 9e. This will be in print in November. Dan Wallace has included 3 separate chapters devoted to Sjogren’s in this edition! The lead author for the pathogenesis chapter is Simon Bowman of the UK, and for the management and treatment chapter is Bob Fox.
- I Chair the Data Monitoring Committee that is primarily responsible for assessing safety of a biologic therapy in an international clinical trial for primary Sjogren’s. That commitment is likely for 1-2 years.
University of California San Francisco
I have maintained a Clinical Faculty appointment within the Department of Medicine since leaving the Faculty in 1990, where I primarily did basic science research in cellular immunology with a focus on Lupus. That has involved primarily serving as a Teaching Attending in the UCSF Rheumatology Arthritis Clinic, overseeing and mentoring Rheumatology Fellows, Residents, and Medical Students.
Due to a previous tenure as President of a RA Patient Assistance Foundation, I was invited with two other colleagues to form a Patient Assistance Foundation for Underinsured. I remain a Board member of the HealthWell Foundation in the DC area. I remain hopeful, that HWF will be able to launch a Sjogren’s Fund, as soon as a FDA approved medication comes to market. Unfortunately … there are major roadblocks to breaking down these barriers.
Finding a Rheumatologist for my Sjogrens
Rheumy as Partner
- A challenge. I specifically interview doctors who think my disease complexity is a fun challenge for them. Yes, I said fun. I have noticed that when a Dr. thinks I’m “interesting” then they have engaged more fully to understand all of my medical issues. I certainly will expect this from my Rheumy.
- Being a Team player. I expect my Rheumy to be comfortable talking with all of my Doctors to ensure they understand my medical conditions and develop the right solutions for me and the entire medical team. They should be a team player and I am the head coach.
- Learning. We all know that most doctors do not have the depth of knowledge in Sjogrens that Dr Carteron has. I expect my new Rheumy to be open to learning from me, the Foundation, and other doctors. I expect them to attend ACR (American College of Rheumatology) conferences and seek out the Sjogrens sessions and dive into the new abstracts presented.
- Engaging with Respect. To me, this means that they are not rushing appointments, that they are fully listening to my concerns, and that they believe what I’m telling them.
- Considering alternative therapies. I expect them to be well-versed in western medicine. They should also be grounded in the basics like nutrition, exercise, and emotional support. In addition, I want them to be open to new therapies (such as the new VNS therapies that are in clinical trial), or acupuncture (which has helped some patients).
- New drug therapies. They should know about current clinical trials and be well-informed about using biologics and other therapies (such as LDN) as options for Sjogrens.
- THE MUST KNOW THAT SJOGRENS IS A SERIOUS DISEASE and NOT A MERE INCONVENIENCE.
What to Bring to First Appointment
There is a good article about what to bring to a first appointment on the Sjogrens Foundations website. Finding a rheumatologist that understands Sjogrens is more than “an inconvenient disease” is a challenge. I don’t really blame the doctors, as this is a common approach to Sjogrens from medical schools. But if they are willing to be educated, then that’s a good start. In addition to the labs, meds, and binder of history stated in that article, I plan to bring:
- New SSF Research on Patients Living with Sjogrens.
- A copy of the most recent Sjogrens Quarterly and request that they subscribe to it.
- SSF Rheumatology Clinical Practice Guidelines, and maybe even Ocular and Oral Guidelines for a full understanding of key Sjogrens Issues. The other guidelines can be found on Sjogrens.org.
- Information about resources, such as The Sjogrens Book, 4th edition.
I look forward to finding my new rheumy and beginning the next chapter of my Sjogrens journey! Maybe they’ll even read this blog and see all the great comments you submit. I’ll keep you posted…
Dear Janet, Thank you so much for your latest post. You have been blessed as you acknowledge. I pray and wish that you will find a new rheumy. Rheumy are in decline if you follow the Am. Coll. Rheum Advocacy site. We need to advocate for training..rheum fellowships and GP’s education! One positive for you! You live in a metro area where you are not limited to very few! In rural areas your search is very compounded by mileage and percentage! Good luck….and…given your skill set and if able to travel a number of miles in California…you will succeed! Be of Brave Heart!
Thanks Melissa! It has been interesting to interview different offices. you would think, given I live in the SF Bay area, that there would be plenty of knowledgeable Rheumies to choose from. However, I’m finding that not to be the case. I can only imagine what it is like for those in less populated areas! I agree that more education and interest in Rheumatology for new docs is critical.
I truly wish you the best at finding a compassionate doctor who believes Sjogrens is serious. I am in a city where the wait list is so long I can’t risk angering my rheumatologist or else I could be cute lose and be at risk of my plaquenil Rx lapsing. I am extremely discouraged because he treats me like an inconvenience and an idiot to be frank. At my appt two weeks ago he actually laughed at me when I brought up new research and he said I needed to stay of the internet bc Sjogrens only affects your eyes and mouth. I’m so miserable and my disease isn’t managed well at all. I’m 34 going on 74, unable to work due to exhaustion and severe stomach issues yet he tells me to see yet another gastroenterologist (who will find nothing wrong with me as usual.) It’s indeed overwhelming but I am looking at larger cities near me who might have better informed rheum. who might see me without a referral. Anyway, thank you for your insight and good luck to you!
Oh dear Christi, I am so sorry. You are metro not rural and you have a uncomprehending rheumy. I thought the problem was rural, only 3 with 4 hrs drive, and of course choice within this metric. Thanks be to the SSJ Foundation to link us…advocate for us. Going to the last 2 national meetings has been a lifeline….not that I could find a good rheumy but that could sustain hope and keep trying. I met people who also made suggestions about far out of my state rheumies, that I hold in my pocket should I get so desperate, if I can travel there (bucket list!). Maybe you can spread your net, concentrically spreading! If you can, I hope you can go the SSJ national meetings, esp if you have no local good support group.
Yes Christi, I have the benefit of being in a major met (SF) and still have limited options for Rheumies that truly understand Sjogrens. However, I have gained a wealth of knowledge from the SSF and I gladly take on the role of educating my next Rheumy. You may want to take the same approach when looking for a new rheumy…find a person who believes their patients stories and who accept the responsibility of learning more about Sjogrens (instead of having a position that they have all knowledge about autoimmune diseases. It does suck to feel so old at such a young age! Wishing you the best!
Thank you so much for posting these great resources. I have a myriad of symptoms that point to autoimmune and just recently developed Sjogren symptoms. I’m planning on making an appointment with a rheumatology to discuss my variety of symptoms and your information to take along will be invaluable as I was worried it might be an uphill battle in whether or not they would believe my symptoms were serious. Thank you!!
Be sure to take along information from sjogrens.org, especially the clinical guidelines. Good luck!