Likes: 
VF Symposium July 2013
I know I have been away for some time, but I’ve just been in and out of the hospital this summer. I’ve also been trying to spend time with friends when I can before they all move for med/grad school. Being in the hospital for several days right before the symposium I was worried I wasn’t going to get to go, but I made it to Philly. They are supposedly going to put some of the lectures on the VF website, so I’ll keep my eye out for them and let you know if they go up there. There was soooo much info covered over the 3 days so this is going to be a very long post.
I flew to Philly the morning of the symposium and of course my flight was delayed so I was a little late, but thankfully made it to the hotel, checked in, dropped my bag off in the room, and ran back downstairs (okay, I totally used the elevator all weekend, I wasn’t going to go up or down 10 flights of stairs) to the conference room with a minute to spare for the individual disease session on WG. This was a great lecture by Dr. Merkel (UPenn), Dr. Lebovics, and Dr. Geetha (Johns Hopkins). This lecture focused on symptoms and treatments and was really informative. Dr. Merkel spoke first and discussed the clinical features (upper airway, pulmonary, kidney, neuropathy, etc.). He said the ANCA titers should not be used to judge therapy since some people are ANCA negative and still have the disease. He also emphasized that it’s important to distinguish between active vs. damage vs. drugs vs. something else. Dr. Merkel talked about the standard treatment (CTX, RTX, prednisone) and the approach; remission-induction (RI) phase (3-4 months): rapid, aggressive and remission-maintenance phase (RM) (≥ 12 months): less toxic, prolonged. It’s not usually enough to just be on prednisone. Traditional treatment for those with severe disease is with Cytoxan which used to be for 12 months but is now given for 3-4 months most of the time, then people are doing well and then transition to Imuran or MTX and stay on that for at least 12 months, some stay on it for years. A recent study shows that Rituxan is very useful for treatment. Research is being done to find out how to use RTX, you get 2 or 4 doses and then go months, but studies are being done to find out the best time to retreat it. Both CTX and RTX work well to get us to remission. For those with non-severe disease or flare comes back not as bad, methotrexate (MTX) is usually used. MTX IS NOT A GOOD DRUG TO USE IF YOU HAVE KIDNEY DISEASE. Dr. Merkel talked about how important it is to keep in contact with your doctor, make regular follow-ups, and tell them about ANY new symptom.
Next, Dr. Lebovics talked about ENT issues. About 60% will have ENT issues upon initial diagnosis. He said WG will somehow eventually attack your ears in one form or another. WG revolves around respiratory epithelials and has target organs – upper respiratory, pulmonary, and kidney – and when Weg’s is active it can target these organs. This is why the majority (I think he said 90%) of the people with WG will end up seeing an ENT.
Dr. Geetha talked about the kidneys. She said 20-50% of people have kidney involvement at presentation with 70-80% having kidney involvement as the disease progresses. Most people have a biopsy done for diagnosis; 25% require dialysis at onset and 25-75% recover fully with dialysis. To preserve kidney function one should control blood sugar, cholesterol, and BP (around 125/75). I also learned that vasculitis must be inactive for 6 months before transplant.
Autoimmunity and Vasculitis by Dr. Paul Monarch (Boston Univ.) was the first lecture Saturday morning. He talked about key innovations such as adaptive immunity – T and B lymphocytes and the difference between local and systemic inflammation. He went on to talk about what’s new, saying the discovery of ANCA led to the discovery of Rituxan and plasma exchange... it was early and I don't remember much else from this one.
Dr. Sharon Chung followed with her lecture on The Role of Genetics in Vasculitis. I really enjoyed this one. She talked about recent studies and what has been found. Recent studies in WG, TAK, and MPA show that chromosome 6 is an important genetic region for autoimmune diseases, including vasculitis. The most important genes in the region are HLA class I and II – WG is associated with class II. Other studies are currently being done to see what else besides HLA contribute to the development of the disease. She also raised the big question, “does it run in families?” Her answer: sort of, but this topic hasn’t been well studied. She talked about a study in Sweden showed a slightly higher risk for family… but I don’t remember the exact number, nor did I write it down (I know I recorded this one so I’ll come back and edit this after listening to it).
Next, Dr. Phil Seo presented on Chronic Medical Effects of Vasculitis. In the first half he talked about vaccines. Flu: he said the best time to get vaccinated is between Halloween and Thanksgiving and to get the shot, not the ‘flu mist.’ “But what if I’m on drug x?” – it doesn’t matter. Varricella Zoster/Shingles: it is a live attenuated virus, can cause nerve damage, prevents some cases of shingles/shortens duration, 5% of patients will have shingles recurrence. It is okay to get this if on MTX, Imuran, or prednisone (<20mg), NOT okay if on RTX. He also talked about monitoring osteoporosis and getting a DEXA scan every 2 years, and recommended trying to go to the same center. It is now recommended to get 1,000mg of Calcium (instead of 1,500mg), the average diet takes in about 600mg so take a pill for the rest (or add more to diet), but said to remember the body can only absorb 500mg at a time. He also talked about mild cognitive impairment (MCI) which is associated with age. MCI starts in the 20s. 10-15% of adults 65+ are diagnosed with MCI (that means most won’t), but if you are he said 25% are rediagnosed as normal. Things that can be done to help prevent MCI include: watching cholesterol, hypertension, getting aerobic exercise, reducing stress, and “use it or lose it” – keep the brain sharp. Mneumonics, autopilot, and memory palace can be used as memory coping strategies. Cognitive behavioral strategies can help you become aware of neg. thinking. He shared a site: www.moodgym.anu.edu.au (I haven’t checked it out yet, but he made it sound like a good site)
Next Dr. Mohler shared some info on Vascular Issues (Heart Healthy). My hands started shaking from the high dose of pred I’m still on, so I didn’t write much down for this one, but did jot down a few notes. He said high BP is common with kidney disease and vasculitis. He recommended walking 3,000 steps a day. He also shared a site called My Life Check Assessment which shows ways to improve heart health: www.heart.org/mylifechecklist
I chose to attend the breakout session on Health Promotion: Managing Remission with Drs. Gary Hoffman and Sharon Chung. I found this to be very informative. They emphasized blood and lab tests are super important. It’s important to check kidney involvement, protein/blood in urine, and creatinine; there is no rule for how often to get tests done, but more often on CTX and less when in remission. If you have organ involvement when diagnosed you are likely to have involvement in the same one with a flare, but they said new symptoms can appear with a flare, so just because it has not happened in the past doesn’t mean it won’t happen in the future. They said the kidneys can go fast so it’s important to monitor blood and urine. (Please, make sure to check your kidney function so you can hopefully catch damage early before needing a transplant like me. I use (and it was mentioned in a lecture) test strips to check my urine at home. They did say that blood could still be in the urine from damage though) Another thing discussed was that if you have WG and you’re in remission and stop all meds, the chance of relapse within 12-24 months is 70-80%... WG has the highest relapse rate. One study suggested that using Rituxan every several months is helpful in keeping patients in remission; some patients though, don’t need long term follow up.
The next breakout session I went to was on Tests for Vasculitis with Dr. Tanaz Kermani (UCLA). I was torn between this, the one on fatigue, and the one on lung involvement but ultimately decided the tests would probably be best for me. If my doctor doesn’t know what to do, I figured I should get the info and give it to her. I already knew most of this from research online and reading on this forum, I’m sure there is a thread here already with this info so I’ll try to be brief with this one. Dr. Kermani went over the diagnostic tests: history and physical, lab studies, imaging, biopsy, and other (evaluation by other specialists, electromyography, scope). Lab testing includes blood counts and chemistries, markers of inflammation (sed rate and CRP), autoantibodies (ANCA: c-ANCA/PR3 or p-ANCA/MPO). Imaging tests: ultrasound, CT, MRI, catheter based angiography (caution with these in kidney disease) and pet scan (can show inflammation but used sparingly because it’s expensive). I can’t have CT’s because of my kidney transplant, so I go to the hospital and have a VQ scan. She also said small vessel vasculitis (WG) relies more on labs and biopsy (skin, lung, kidney,...)
After the break there was another breakout session. I went to the one on Time Management and Energy Conservation. It was pretty much stuff I already knew... Get organized, set priorities, be flexible, take breaks when needed... She did bring in cool visuals aids though, so I liked that. I don’t plan on having kids for a very long time, but I kind of wish I went to the one on fertility and family planning instead just so I know for the future. Oh well, there’s always the next one.
On Sunday I went to the session on Alternative Medicine with Dr. Julie McGregor (UNC). She was super nice and we discussed things such as acupuncture, chiropractor, massage, energy healing, aromatherapy, and yoga. She had tried most things she talked about and recommended trying them to see what works best for us. There was also feedback from patients attending this session. There seemed to be mixed reviews about the alternatives, but more positive, I think only one guy said it didn’t help him. Some people mentioned the costs and insurance not covering it, but someone said to call your insurance because some insurance do cover this (she had Kaiser and said her insurance covers acupuncture, massage and takes advantage of that coverage). I made friends with a lady at the symposium and she said she does power yoga and it has really helped her. I’m going to try that one, I try to do yoga when I can but haven’t tried power yoga.
After there were presentations given on the latest advances in research. Dr. Grayson (NIH) gave one on Biomarkers and Translational Research and Dr. Langford on Research the Past 2 Years. They were both really informative and discussed research being done to find tests to help with early diagnosis.
Friday night they showed this video on Empathy by the CC. I found it to be a nice video; you just never know what someone is going through. Empathy: The Human Connection to Patient Care - YouTube
It was great to talk to doctors and be able to go up and ask them any questions. Learning more about WG and other forms of vasculitis from experts was great, but the best part was meeting and sharing experiences with other weggies. Hearing how great so many of them are doing definitely gives me hope that I can get better and there are better days ahead. I always hear on this forum how important it is to have an experienced doc, and hearing it at the conference from the doctors and my new weggie friends, I am working on a plan to get in to see a specialist.
Sorry for this long post, but I hope this info I posted will help out some of you and our future friends that join the forum. As I remember things, I’ll come back and edit this post, but I think I hit all the main points here... I am so glad I went, and if you get the chance to go to one in the future I would recommend it.
Reply With Quote
) do you remember what was said about the diffrences between active vs. damage etc.?
Originally Posted by Alysia
Bookmarks