Sjogren’s and Hydroxychloroquine — Your Voice is Needed!

Sjogren’s and Hydroxychloroquine — Your Voice is Needed!

Lately, I have been writing a lot about the Sjogren’s Foundation and programs that are being created for patients. As Board Chair, I love to share my experiences and knowledge with you, and the pandemic has heightened my need to communicate. Today, I am asking you to complete the Sjogren’s Foundation Survey on Sjogren’s and Hudroxychloriquine use (and use of other anti-malarial drugs to treat Sjogren’s). Whether you currently take anti-malarial drugs or not, and if you reside in the US, please do take the survey! It will help patients enormously!

In this article, I talk more about the need for information on Sjogren’s and Hydroxychloroquine, and I offer a few other thoughts on why I write. Soon, I will be writing more about some of the challenges we face as patients, and some ideas to help us live a productive and meaningful life. But lately, and until the National Patient Conference is completed, the Sjogren’s Foundation is top of mind!

(more…)

My Rituxan and Sjogrens Journey … Is it worth it?

My Rituxan and Sjogrens Journey … Is it worth it?

On November 7th my Rheumy called me to task and suggested I was in denial about the severity of my Sjogrens disease level.  In fact, she challenged me with an email stating that the “long-term ostrich path is rocky” for the progression of the disease and further organ damage.  If you read my last post on grief, you already know I was in a major relapse. Clearly,  it was time to pull my head out of the sand and move to a more aggressive form of treatment. Last year we had discussed biologics as the next step, so I knew that it was time to begin my Rituxan and Sjogrens journey.

Before I agreed to move forward, I needed to have an in-depth drug conversation with my Rheumy and discuss the treatment experience with other patients. I had real anxiety about the treatment because once it’s in you, it is in you for months. To cut to the chase, I had my first Rituxan infusion on December 8th and my second on December 20th.

(more…)

Pin It on Pinterest