Once again the Vasculitis Foundation put on a very informative one day conference at UCLA medical center in Santa Monica, California. I find the excitement builds up the morning of the conference as you scan the attendees trying to figure out if they are one of ‘your kind’ (having the same type of Vasculitis as you have. Some people you recognize right away from their profile pictures from Face Book, others you need to wait till they fill out their name tags. It is always like a family reunion finding people who share you ailment.
In the past I have taken line by line notes at these conferences but now the Vasculitis Foundation tends to record these talks and put them up at a later date so I find myself able to sit back and just take it all in while noting some key points that I find helpful and interesting. As always what I find interesting may not be what you find interesting. We are all seeking different information from the lectures, all trying to find that one tidbit that provides the missing link or allows us to improve our quality of life.
Here are my tidbits but as always, I have CSS so I tend to focus on CSS information. Also I did not attend all talks since I also volunteered to assist in other parts of the conference.
- Don’t get caught up in the name of your type of Vasculitis, just know you have Vasculitis and go from there, many of the treatments are similar and there is overlap in symptoms in the varying types of Vasculitis.
- People do get salivary gland involvement
- ‘strawberry gums’ are also seen in Vasculitis patients
- ESR (Sed Rate) and CRP (C- reactive Protein) both blood markers for inflammation can be elevated for a number of reasons. Do not assume it is only because of a flare. They are also elevated in infections, bronchitis, and arthritis. Yes, get it checked out and rule out these other causes but do not assume an elevated numbers is automatically signaling a flare.
- Pet Scans can be very valuable for someone who is having VERY high CRP and Sed Rate because it can show exactly where the inflammation is occurring. They are expensive and many insurance companies will not cover them. They are used more often in large vessel Vasculitis.
- A doctor’s goal in Vasculitis patient care is to: Stop Inflammation, Induce Remission and oversee Remission Maintenance.
- All Vasculitis Treatments have these common principles
- Avoid sick contacts
- Maintain hand hygiene (wash hands, use hand sanitizers)
- Report any symptoms of infections to your doctors promptly
- Get you flu and pneumonia shot
- NO live vaccines that includes Flu Mist and Shingles
- Get contraceptive counseling
- Continue Lab monitoring through your life even when you are in remission and symptom free
- Close follow-up minimizes relapses and enables you and the physician to catch the relapses early. Being in remission does not mean to stop your monitoring.
- Vasculitis Patients go through the cycle of Active Disease – Flare – Flare Again – Damage to Organs, if the cycle is not stopped. This is WHY it is so important to get proper medical care early. The best place to get care is at a Major Vasculitis center.
- Doctors use prednisone enough to help and keep your Vasculitis under control but try not to use too much as to do harm. It is a balancing act and there is no manual for this.
I think a big takeaway point is that this is a LIFE LONG Journey with this disease. It is your responsibility to get educated and stay educated about your illness. Knowing more and knowing what to expect will actually improve your outcome. Physicians can help you get into remission and stay in remission but there is no cure so you must be vigilant because Vasculitis can come out of remission at any time.
I know this isn’t the detailed reports I usually give but I am hoping my fellow attendee will share their information about the Kidney and Nerve Talks.
Thanks for reading but honestly these summaries never replace being there yourself – the doctors make the time to answer all your questions and even stay late to talk to you if needed. They are willing to give out their special office numbers and get you into see them if needed or consult with your local doctors. I know the distance is a problem for some patients but sometimes if you plan ahead you can make a vacation out of it.
Also take the time and look into the Vasculitis Foundation’s Web series (live and saved on u-tube) to see talks from previous conferences and live, online talks about Vasculitis.
Hey – have you signed up for the one on the 5th of May yet? It should be a great one. (they put them all online usually within a week or two afterwards) Sign up here.