Two Perspectives-- the 2008 VF Patient Symposium

The 2008 Vasculitis Foundation Symposium held at the Mayo Clinic from June 6 to June 8 was an enormous success. Churg Strauss Syndrome patients were well represented with close to 30 CSSers and family members attending. Alicia Perkovich and Suzanne DePaolis share what the Symposium meant to them.

Vasculitis Symposium 2008
By Alicia Perkovich

Attending the Vasculitis Symposium this year was everything I hoped it would be and more. I was really looking forward to not only meeting others with CSS, but also hearing the expert speakers talk about this rare form of vasculitis. We’ve all heard how rare Churg Strauss Syndrome is, but that fact truly hit home while sitting in an auditorium of 450 people, only 17 of which had CSS. We were all anxiously awaiting any information that pertained to ‘us’ – anything at all.

There were many wonderful, informative sessions throughout the day. The sessions that really hit home for me were the ones centered around truly understanding the complexity of disease activity, achieving & maintaining remission through drug therapies, and learning how to take a more proactive approach on the home front to reduce symptoms and stress.

Typically (not always) our SED rate or CRP will go up with disease flares or any other infection/inflammation, but not always in tandem. This is sometimes the first sign that something isn’t quite right. Several drug therapies were introduced as a means of getting the disease under control. Cytoxan was described as the ‘heavy hitter’ and is used with severe organ involvement. It should be used short term and monitored very closely. Methotrexate and Imuran are used interchangeably for less severe, non life threatening disease activity as a steroid sparing agent. The goal here is to get as low as possible on prednisone (or even off). Cellcept and Rituximab in addition to a few others were also mentioned as possible treatments when Methotrexate and Imuran are not well tolerated. Some people with CSS are treated with prednisone alone. Finding the right combination of medications is sometimes an exercise in trial and error. We all absorb medications and respond differently. Unfortunately, there is no “One Size Fits All’ presentation or treatment of CSS. The most encouraging news: It is possible to reach remission permanently in CSS.

This brings me to the question of the day – What is “REMISSION”? “Remission” was defined as the absence of signs & symptoms of active disease. It does NOT mean absence of 'evidence' of disease related organ damage. “Meaningful Remission” was defined as at least 6 months on a regimen of low dose prednisone + immunosuppressive therapy with absence of signs & symptoms of active disease. Regular lab-work can indicate active disease, but does not always tell the full story. I was personally relieved to hear this. One of the biggest questions from all CSSers … “My labs are normal, but why do I feel so bad?” If you’re anything like me, you’re leaving out certain symptoms at your doctor’s appointments because you feel like the list is just too long. It’s important for us to trust in our symptoms as they are sometimes the best indicator of what is coming. Normal lab-work is common while on prednisone, so go ahead and make the list –don’t leave anything out. Educating yourself about your disease, knowing your body, and monitoring your own symptoms is empowering and allows us some control over what seems like an uncontrollable situation.

Finally, there are several things we can do from home. Monitoring weight (as best we can on prednisone), blood sugars, blood pressure, diet, and having yearly bone density scans are all things we can be proactive about. Several studies were presented on the benefits of yoga, acupuncture, meditation, massage, and even hypnosis, showing a dramatic reduction in anxiety and pain, and achieving better quality of sleep. Sometimes it’s the little things that are enough to improve the quality of your day – one day at a time.

In closing, attending the symposium was an invaluable experience. The friendships made and knowledge obtained will last a lifetime. I walked away from this experience more passionate and determined to tell my story, continue educating myself and others, and volunteering in any way I can. I’m already looking forward to the next one.

Vasculitis Symposium 2008
By Suzanne DePaolis, aka Karen

I hope you are not expecting your traditional 417 people attended the biannual Vasculitis symposium held at the Mayo Clinic in Rochester, Minnesota on June 6th -8th. Many famous faces from the world of vasculitis practice and research were there sharing information and giving timely advice. Everyone enjoyed the diverse topics that ranged from Yoga to Modern Treatment Protocols. The Saturday evening banquet was a success with much discussion between new found friends.

Ok, anyone that knows me realizes that I am incapable of writing that way. I would rather tell you how it felt to be at the conference. How it made a difference in my life and the way I will deal in the future with my illness; How a simple thing like a conference has empowered me to go out there and not just live life but to BE ALIVE!

Some of us got good news at the conference (oh, good it’s just a side effect of a med), some of us got bad news (the numbness means some nerves are gone and probably won’t come back). Overall the importance of a conference like this is that we got information and this information came from the Top Doctors in the United States on vasculitis. We got to meet them, hear them talk, touch them (Oh god! I am sounding like a stalker…) and they listened to us. Truly listened and answered our questions. They did not have one hand on the doorknob ready to exit the room; they stayed for every question and anything they could not answer came with promises of sending it to a doctor that could answer.

We are coming home feeling empowered and less alone with our illnesses. We have seen others with moon faces, budda bellies, odd noses and thinning hair. We sat and ate with people who also finished everything on their plates due to being on prednisone I wrote the first night in my journal how everything seemed right in the world, how I didn’t feel so lonely in my illness anymore and that is still true. I have made friendships that I expect to last a lifetime. I now can hear their voices and see their faces as we exchange emails. And when things get really bad or I am just having one of those truly awful Vasculitis days…. I know now… “Who YA gonna call?” My Vasculitis Buster friends!