It’s been a busy time learning and listening so far for the Arthritis Foundation Patient Partners. Here’s a daily dose of what they are hearing about in all the latest research and treatments available for people with arthritis.
Veteran’s Day – November 11, 2019
Arthritis in the Military
Raising awareness for our veterans and military service members with osteoarthritis is important to Patient Partner Nick Steen. He shared his story at a luncheon to highlight the importance of continued research, education and advocacy for helping those who serve our country and develop osteoarthritis.
“My daughter and I share our arthritis journey together. We are partners that tackle arthritis together.”
Not only does Nick live with OA, his daughter has juvenile idiopathic arthritis, so fighting arthritis means so much to him and his family. Read more about Nick’s journey here.
It’s Not Just Physical
Patient Partner Raquel Masco attended a session on Pain, Anxiety & Depression. The session highlighted the need for taking a closer look at the mental health aspects of coping with inflammatory arthritis.
“It was very interesting to see the numbers on how companionship and good healthcare matter.”
I was especially interested in the information shared on Lupus and black women, as they discussed predictors of mortality for women like me. It’s so important to have resources for people to understand and navigate their disease.
By Raquel Masco
Family Planning, Pregnancy & Rheumatic Conditions
Patient Partner Mariah Leach of Mamas Facing Forward has been excited to have more information related to family planning, pregnancy and arthritis this year, so she can share the latest information with her support group. Here’s a summary of what Mariah has learned so far:
Contraception and Fertility: Dr. Mehret Birru Talabi
This session sought to recognize which contraceptives are safe and effective for women living with lupus. It also touched on fertility and appropriate assistive reproductive technologies for women with lupus.
Patients don’t expect their rheumatologists to be experts in contraception, but Dr. Talabi pointed out patients do want guidance from their rheumatologists on the best way to safely achieve their reproductive goals – whether that’s prevention or pregnancy.
Dr. Talabi emphasized that every woman with SLE can find effective and safe contraception. Based on my personal knowledge of how important pregnancy planning is when you are living with a chronic illness, I hope that doctors will feel encouraged to discuss this topic with their patients, and that patients will feel empowered to choose an effective form of contraception as part of their family planning.
Dr. Talabi shared that infertility isn’t common in women with SLE, but that if women with SLE do struggle with getting pregnant, assistive reproductive technologies are safe.
Medications in Pregnancy and Lactation: Dr. Bonnie Bermas
When a woman with lupus wants to become pregnant, Dr. Bermas stressed that the best outcomes for mother and baby are when pregnancies happen in a planned and controlled manner.
Dr. Bermas discussed which SLE medications are safe for use during pregnancy. In particular, she cited studies that show hydroxychloroquine (HCQ) actually improves SLE pregnancy outcomes. I think this type of data/knowledge is particularly important for doctors to have, to help patients overcome the pressure from society that it’s “always” better for the baby if women are unmedicated during pregnancy.
Honest and Accurate Conversations to Plan Lupus Pregnancies: Dr. Megan E Clowse
This session focused on how doctors interview their patients with lupus about pregnancy issues. Dr. Clowse shared the HOP-STEP (Healthy Outcomes in Pregnancy with SLE Through Education of Providers) program that can help doctors with these important conversations.
Dr. Clowse used videos to illustrate the importance of doctors asking their patients open-ended, encouraging questions. For example, if a patient is asked “you’re taking your birth control, right?” many patients may feel they have no choice but to answer yes even if they’d like to plan a pregnancy. Dr. Clowse recommended rephrasing this question as “do you have any plans to start a family in the next year?” which is open ended and gives the doctor a starting point for a pregnancy planning conversation if that’s what the patient wants.
The takeaway from this presentation was the importance of collaboration between doctor and patient when it comes to planning a pregnancy. Patients need to feel comfortable bringing up pregnancy and empowered to be involved in pregnancy planning. Doctors need to be open and non-adversarial, encouraging collaboration instead of simply telling patients what to do. If a woman with lupus is interested in pregnancy, the doctor and patient need to be on the same team with the joint goal of planning for the safest possible pregnancy.
By Mariah Z. Leach, Mamas Facing Forward
Cardiovascular Risk & RA
Patient Partner Cheryl Crow looks through two different lenses as she attends information sessions – a patient with RA and an occupational therapist. She knows the importance of physical activity in managing RA and the risks for cardiovascular diseases.
“It’s always a little scary to learn that your lifespan might be affected by your disease. Sometimes this information makes me feel more invigorated to live my life to the fullest, and other times it makes me a little sad. How long will I be alive to see my son grow up?”
There were several Interesting facts I learned in a session on cardiovascular risk & RA.
- Physical inactivity is a risk factor for cardiovascular disease in the RA population
- People with RA have an increased risk of mortality related to cardiovascular disease – there’s no model that FULLY explains the risk of cardiovascular disease in this population currently.
- A pharmacist talked about the medications we take for RA and whether they might be the reason for the increased risk.
- The pharmacist works in an integrated clinic and found huge gains when physical therapy is integrated with RA.
It was interesting to learn that physical activity is important for RA not *just* from the joint health perspective (which I knew as an OT), but also from a cardiovascular health standpoint. This definitely made me feel more invigorated to incorporate more cardiovascular exercise into my daily routine – I used to do a lot of running and swing dancing but I’ve gotten out of the habit after having my son and having a few other issues like a car accident that led to whiplash and a concussion!
“If every (implied rheumatology) clinic could have a physical therapist within it, that would be the ideal” – pharmacist, Leticia A Shea PharmD. I agree with this but would just add that occupational therapy would be ideal to work not on exercise but on fatigue management and strategies to successfully complete meaningful activities of daily living (from walking the dog to cooking dinner).
By Cheryl Crow, OTR, Arthritis Life
Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they learn more at the American College of Rheumatology annual meeting. Check out them out on Twitter, Facebook and Instagram as they share information throughout the day while they represent your patient voice.