VF Symposium July 2013

[rebekah]

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 (http://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 (http://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 (http://www.youtube.com/watch?v=cDDWvj_q-o8)

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. :)

[Alysia]

Hi Rebkah.
thank you very much for posting all this important information :thumbup:
yes, I believe you can do better.
can you tell from what you have learned, if there isnt kidney involvement at first, what are the chances for it ? and is it true that c-anca is positive for wg without kidney involvment and p-anca is positive for wg with kidney involvement?
and last question (you are my specialist now :smile1: ) do you remember what was said about the diffrences between active vs. damage etc.?

[tonyk]

What an amazing post thanks a lot for your time and effort, Tony

[Ruotsi1]

Thank you for this post, very informative!!

[rebekah]

Hi Rebkah.
thank you very much for posting all this important information :thumbup:
yes, I believe you can do better.
can you tell from what you have learned, if there isnt kidney involvement at first, what are the chances for it ? and is it true that c-anca is positive for wg without kidney involvment and p-anca is positive for wg with kidney involvement?
and last question (you are my specialist now :smile1: ) do you remember what was said about the diffrences between active vs. damage etc.?
So glad I could attend and get this info and share it with you all. :)

Alysia, In one of the lectures one doctor said that 70-80% will have kidney involvement as the disease progresses but that doesn’t mean you will. Other than that info, I don’t really know. I would keep in touch with your doctor and have regular follow ups and lab tests so you can stay on top of it and hopefully catch kidney involvement early (though I hope you don’t have it attack your kidneys). I would also recommend getting the urine test strips and you can check for blood and protein in your urine regularly at home. The strips are inexpensive.

I think I remember reading that those with p-ANCA involvement have fewer organ involvement than c-ANCA, so renal involvement would be less common. I’m not positive and could be wrong; I don’t want to be posting wrong information, so if I am wrong, someone please correct me and I’ll edit this.

In regards to active vs. damage vs. drugs, they didn’t really specify, but I guess it is a little difficult. That would’ve been a good question to ask to see if they could provide more info on this topic. I’ll start my list of questions for the next symposium. He did say if you have inflammation from say your nose for months or longer it might be damage and might not be normal again. Damage may not necessarily be active, like with the kidneys they may be scarred but that doesn’t mean it’s an ongoing problem. The meds have so many side effects too. If you have any new symptom I would contact your doctor so you can get in for a visit and get lab work done to see if you’re tests show your weg’s is active to help decide if it is something new or old (damage or from meds). Did I kind of answer your questions? Sorry I can’t be of much help here... maybe someone can better explain this.

[drz]

The two most disturbing I have learned lately about Wegs are: 1. the high chance or probability if one goes off all their meds. Most people will flare but a few don't so it might still be worth trying if the risk isn't too high. 2. Many Weg problems continue to develop later even though they might not be present at first, one example is most people eventually develop some skin problems or symptoms but few have them initially. There are of course many other unpleasant facts about Wegs but most of those I learned a couple years ago.

[pberggren1]

That is interesting about MCI. I know I have foggy spells now and then. Some days I am more sharp than others and some days I am more foggy than others.

I know that I wont get a vaccine again unless I am forced into it like with my implants.

That is good to see they talked about alternative medicine. I know that I could not live without a chiro and would not be able to walk today without one. He literally saved my life.

[rebekah]

Hearing that Weg's has the highest rate of relapse of all the forms of vasculitis once off all the meds was scary. But there is a 20-30% chance that you can be drug free and won't flare for some time. The docs there said they are a little hesitant to take us off the meds because of that, but if we want to and feel we can get off the meds they won't stop us and will still be our doctor. So if you feel you can get off the meds it may be worth a try. I met a few ladies that were drug free, one has been drug free for 9 or 10 years - that's awesome.

Thanks for sharing your positive experience with your chiropractor, Phil. It's definitely something I want to look into even though I know my insurance doesn't cover it. I'm sure I'm one that could benefit from seeing one.

[pberggren1]

That is why I will never go off the meds. I never want to flare again.

Actually, everyone should see a chiro at least once a month for a tune up.

[Pete]

Great info, Rebekah! Thanks for posting it.

[andrew]

Thanks so much for that post and the links Rebekah! A great, informative read. I must put the VF symposium on my bucket list, it would be fascinating to go!

[pberggren1]

Ya, you jaunt off to Europe as if it is a walk in the park so this should be easy peasy.

[andrew]

Ya, you jaunt off to Europe as if it is a walk in the park so this should be easy peasy.

LOL! I wouldn't so much call it a walk - more of a gentle stroll with a sit-down every now and then.

[pberggren1]

You are hilarious Mr. Kahuna.

[andrew]

Everyone should watch the video Rebekah links to in her post. It's awesome!

cDDWvj_q-o8

[rebekah]

Thanks for linking the video directly here, Andrew, didn't know we could do that. And yes, you should try to make it to the next symposium if you can. :)

[Debbie C]

Rebekah ,first of all it's good to see you are well enough to travel, and thanks for all the great info,the video was also awesome ( you just never know who has it worse than you do ). You mentioned my dr. at CC ( Dr. Gary Hoffman ). Reading your info I have some concerns that I will have to bring up with with ,like the fact that prednisone alone will not control this yet some people can be drug -free ( confusing and scary,since I am just on pred.) also the point on your urine test,mine always come back showing a trace of blood and neither him nor my kidney dr. are concerned (just me) I'll have to read your report again and make a list of questions this time. So with all those docs. were you able to find one ???

[rebekah]

For the urine tests, in the session with Hoffman and Chung, they did point out that blood could still be in the urine from damage. From what I heard, Dr. Hoffman is very knowledgeable, I wouldn't be too concerned about it if he isn't. I'll go back and add that piece of info into my post. I asked 2 docs there, but wasn't able to get a recommendation about one in the Tampa area, they unfortunately didn't know of someone. I was hoping to ask Dr. Langford about the doc coming to USF from CC but didn't get a chance. There were so many great docs there, but I was really impressed with Drs. Hoffman, Langford, and Merkel. I came home to look up who I can see with my insurance and Dr. Langford is the only one, but she is awesome, so I'm going to try to get in and see her. It's time I get in and see an expert.

[mishb]

Thanks so much for that post and the links Rebekah! A great, informative read. I must put the VF symposium on my bucket list, it would be fascinating to go!


Thanks Rebekah, your post was awesome - you must have been worn out writing everything down :biggrin1:

Andrew, we so have to go to one of these.........can you just organise it so that we can have one in Australia.
I know many people who would benefit from it.
In the words of Captain Jean Luc Picard - make it so, number one :flapper:

I wish there could be one at different places around the world to enable everyone to benefit.

Thanks again Rebekah

[pberggren1]

The US has over 300 million people, much more than any other country that is that advanced in health care.

[makabe]

You took amazing notes, Rebekah! I wish I'd met up with you while we were there! It was a great symposium.

I saw the question about developing kidney involvement over time if you didn't have it initially. I am in that situation myself. Dr. Merkel is my doctor, so I will ask him when I next see him (not till Sept., I think) and come back with the answer. I was a bit confused on this issue myself b/c he said MANY people relapse with their original symptoms but some don't. He also said that the profile for "non-severe" GPA/WG often included higher prevalence of relapse. I was unhappy, of course, to hear that at first, but have since decided that if I never get off medications, I probably am much less likely to have to work about the severe problems of a major flare or progression of the disease.

[andrew]

Thanks Rebekah, your post was awesome - you must have been worn out writing everything down :biggrin1:

Andrew, we so have to go to one of these.........can you just organise it so that we can have one in Australia.
I know many people who would benefit from it.
In the words of Captain Jean Luc Picard - make it so, number one :flapper:

I wish there could be one at different places around the world to enable everyone to benefit.

Thanks again Rebekah

I have absolutely no idea how I would organise that but...now I come to think of it...I know someone that does! I'll get some tips of him and see how frightening it sounds lol

[rebekah]

I wish I had known you were going. I would have loved to have met you, Karen. I agree, it was a wonderful event. I went into my typical college student mode and just went crazy taking notes. I knew with all the information being thrown at me those 3 days I wouldn't remember much by the end if I didn't write stuff down. At least I can easily refer back to my notebook, or this site because I'm pretty sure I covered everything in this post. My goodness it's so long.

[Alysia]

Thank you so much rebekah for the info. It is very important. Also scary :w00t: and makes me sad :crying: god knows what is waiting to us :confused1: anyway i can see that you are going to be the best wg doc :thumbup:

[Barbara N]

So glad I could attend and get this info and share it with you all. :)

Alysia, In one of the lectures one doctor said that 70-80% will have kidney involvement as the disease progresses but that doesn’t mean you will. Other than that info, I don’t really know. I would keep in touch with your doctor and have regular follow ups and lab tests so you can stay on top of it and hopefully catch kidney involvement early (though I hope you don’t have it attack your kidneys). I would also recommend getting the urine test strips and you can check for blood and protein in your urine regularly at home. The strips are inexpensive.

I think I remember reading that those with p-ANCA involvement have fewer organ involvement than c-ANCA, so renal involvement would be less common. I’m not positive and could be wrong; I don’t want to be posting wrong information, so if I am wrong, someone please correct me and I’ll edit this.

In regards to active vs. damage vs. drugs, they didn’t really specify, but I guess it is a little difficult. That would’ve been a good question to ask to see if they could provide more info on this topic. I’ll start my list of questions for the next symposium. He did say if you have inflammation from say your nose for months or longer it might be damage and might not be normal again. Damage may not necessarily be active, like with the kidneys they may be scarred but that doesn’t mean it’s an ongoing problem. The meds have so many side effects too. If you have any new symptom I would contact your doctor so you can get in for a visit and get lab work done to see if you’re tests show your weg’s is active to help decide if it is something new or old (damage or from meds). Did I kind of answer your questions? Sorry I can’t be of much help here... maybe someone can better explain this.

thank you rebekah, I have printed and translated the symposium to give to my doctor, he is very interested but needs to deal with his specialist friend because he is just a country doctor that cares.I want him to know about the medication because a main part of my problem is kidney failure, I am having problems with my bladder now and I have Tracheal Stenosis, what a mess and I just fell of my horse and hurt my ribs so I can't ride for a while but my horse has been keeping my levels of triglycerides, potassium and creatine way down. When I don't ride they go straight up..Thanks for sharing all of the information to all of us and after what you have been through. You are a strong girl

[Barbara N]

I have absolutely no idea how I would organise that but...now I come to think of it...I know someone that does! I'll get some tips of him and see how frightening it sounds lol

Try to get cheap flights and hotel because most of us come from the other side of the world but it would be awesome and we could all meet each other and pay your bar bill.

[Barbara N]

Rebekah ,first of all it's good to see you are well enough to travel, and thanks for all the great info,the video was also awesome ( you just never know who has it worse than you do ). You mentioned my dr. at CC ( Dr. Gary Hoffman ). Reading your info I have some concerns that I will have to bring up with with ,like the fact that prednisone alone will not control this yet some people can be drug -free ( confusing and scary,since I am just on pred.) also the point on your urine test,mine always come back showing a trace of blood and neither him nor my kidney dr. are concerned (just me) I'll have to read your report again and make a list of questions this time. So with all those docs. were you able to find one ???

months. The doctors juts keep putting me on antibiotics can find out what is wrong because my kidneys are in really bad shapehe to I am really getting worried because I am losing feeling in that whole area. My computer is broken so I can't fix this
Hi Debra, I have t same concerns, I am only on Pred. and I have bladder problems and have had for over 6 months and they just give me antibiotics. I go in this week to see the urologist and I hope they find the problem. My belly has been extended and hard for about 6 months now an

[rebekah]

I'm so sorry to hear about your injury and health issues, Barbara. I hope your doctor can help you so you can feel better. I want to hear you're back to riding your horses soon.

[rebekah]

Oh, and going through the notes on my phone I found the book a doctor at the symposium recommended. "Anatomy of an Illness" by Norman Cousins. Sounds like a good read... Just throwing this out there if anyone's interested.

[drz]

Oh, and going through the notes on my phone I found the book a doctor at the symposium recommended. "Anatomy of an Illness" by Norman Cousins. Sounds like a good read... Just throwing this out there if anyone's interested.

Norman Cousins laughed himself well. Here quote from Wikipedia "Told that he had little chance of surviving, Cousins developed a recovery program incorporating megadoses of Vitamin C (http://en.wikipedia.org/wiki/Vitamin_C), along with a positive attitude, love, faith, hope, and laughter induced by Marx Brothers (http://en.wikipedia.org/wiki/Marx_Brothers) films. "I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep," he reported. "When the pain-killing effect of the laughter wore off, we would switch on the motion picture projector again and not infrequently, it would lead to another pain-free interval."

[andrew]

Try to get cheap flights and hotel because most of us come from the other side of the world but it would be awesome and we could all meet each other and pay your bar bill.

Thanks Barbara I'll see what I can do. I've had an initial chat with my mate who organises conferences as part his business. Sounds extremely daunting but doable. I've got a few things to investigate both here and with the Vasculitis Foundation in the US as it would need to involve them to at least some extent to lend it credibility if not some support.

[Barbara N]

Thanks Barbara I'll see what I can do. I've had an initial chat with my mate who organises conferences as part his business. Sounds extremely daunting but doable. I've got a few things to investigate both here and with the Vasculitis Foundation in the US as it would need to involve them to at least some extent to lend it credibility if not some support.

It would be fantastic. Thank you so much for helping me learn how to use the computer

[Alysia]

I am only on Pred. and I have bladder problems and have had for over 6 months and they just give me antibiotics. I go in this week to see the urologist and I hope they find the problem. My belly has been extended and hard for about 6 months now an

Dear Barbara. Im realy worried about you. are you starting to recover from your injury? Im also worried because of what you wrote about your kidneys. I think you need to see the best WG doc ASAP. please take care of yourself.

[woz]

Thanks for posting that info, excellent. The video link Empathy: The Human Connection to Patient Care - YouTube (http://www.youtube.com/watch?v=cDDWvj_q-o8), was great.
I keep telling people I know,"walk a day in my shoes" , but you look fine, they say, or, you will get over it. I only hope so.
Once again, Great post.

Regards Woz.

[annekat]

Wow, Rebekah! What a great job you did summarizing the symposium. Thank you! It was interesting to hear about the comments of so many of the specialists whose names I had become familiar with through this forum. I have bookmarked this thread in my Health folder for later perusal.

[HopeinTN]

Thanks for sharing the info. The video was very touching. Not sure how I got side tracked but I then stumbled onto a video of a lung surgery. Yikes, that scared the crap out of me. Glad I didn't watch that before my surgery.

[nupertfischer]

I agree hope that everyday is better and the next day is better than yesterday, now it's a great privilege for me to be a member of this forum site. As of now the only thing I wanna do is to have a post on christian counseling Tampa FL (http://www.truelightonline.com/). Thanks for this.

[Barbara N]

Dear Barbara. Im realy worried about you. are you starting to recover from your injury? Im also worried because of what you wrote about your kidneys. I think you need to see the best WG doc ASAP. please take care of yourself.

You take care too. I also have exactly the same symptoms as you and was worried about it being my kidneys, I am seeing a kidney specialist at the end of august. My belly was extended for 6 months. They said it was just a small infections but I know better. I also know when a dose perdnesone is required. and it was time. I am feeling much better from the ribs and all around The green tea seems to work. I keep dosing off I don't know why. Dad used to do that all of the time we thought it was really we didn't ' know that swollen joints mine but they are going and join t and marks. Don' wprry about me, we wiil make it

[Barbara N]

Dear Barbara. Im realy worried about you. are you starting to recover from your injury? Im also worried because of what you wrote about your kidneys. I think you need to see the best WG doc ASAP. please take care of yourself.

You take care too. I also have exactly the same symptoms as you and was worried about it being my kidneys, I am seeing a kidney specialist at the end of august. My belly was extended for 6 months. They said it was just a small infections but I know better. I also know when a dose perdnesone is required. and it was time. I am feeling much better from the ribs and all around The green tea seems to work. I keep dosing off I don't know why. Dad used to do that all of the time we thought it was really we didn't ' know that swollen joints mine but they are going and joint and marks. Don' worry about me, we wiill make it because we have each other.
Barbara

[gilders]

Thanks for the report.
I seem to be picking up from most of the replies that most of you seem to be taking medication (Pred) for life.
I'm wondering if we are treating it differently in the UK (or maybe it's just my specialist), but we seem to attack aggressively with high doses, get it into remission and always have the long term goal of coming off Pred.
This has led to me having 3 relapses, but pred doesn't just have "possible" side effects, but definite and severe side effects.

My meds have always been a gamble and a balancing act for the last 19 years. Do I stay highly immuno suppresed to keep WG at bay and risk a life threatening bug attack?
Do I stay on pred for life with guaranteed side effects or come off them with he high chance of a WG relapse?

Nobody has the correct answer because this illness is never the same between 2 people or even the same with the same person when you relapse.

I'd also be interested to know how accurate the average age of diagnosis is now. Most website state 40-55, but I'm reading mostly mid-late teens getting diagnosed now (such as myself at 17).

[NikkiNicole]

My doc's goal is to only have me on Prednisone while I have lots of inflammatory markers. If my CRP goes down then I can wean completely off the prednisone. But, as usual, we are all different in so many ways!

[Debbie C]

When I saw my reumy at Cleveland Clinic last time,he said I would be on pred for life. But when I just saw my kidney dr.,he said if you have been in remission for 5 years then the protocol is to take you off it. I go back up to Cleveland in Oct. so I will ask him.
And he does seem that there are alot of people that are getting this at a younger age. Maybe it's enviromental or that drs. are just learning a "little" more about this disease and dignosing it earlier.

[skipper]

<br>
<br>
<br>
<table style="width: 500px" class="wysiwyg_dashes"><tbody><tr valign="top" class="wysiwyg_dashes_tr"><td class="wysiwyg_dashes_td">Is there anyone in the Peterborough Ontario Area going to Toronto for the symposium in November?</td><td class="wysiwyg_dashes_td"><br _moz_dirty="" type="_moz"></td></tr><tr valign="top" class="wysiwyg_dashes_tr"><td class="wysiwyg_dashes_td"><br _moz_dirty="" type="_moz"></td><td class="wysiwyg_dashes_td"><br _moz_dirty="" type="_moz"></td></tr><tr valign="top" class="wysiwyg_dashes_tr"><td class="wysiwyg_dashes_td"><br _moz_dirty="" type="_moz"></td><td class="wysiwyg_dashes_td"><br _moz_dirty="" type="_moz"></td></tr></tbody></table>
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. <br>
<br>
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. <strong>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.</strong> <br>
<br>
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.<br>
<br>
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 <strong>v</strong><strong>asculitis must be inactive for 6 months before transplant. </strong><br>
<br>
<strong>Autoimmunity and Vasculitis</strong> 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. <br>
<br>
Dr. Sharon Chung followed with her lecture on <strong>The Role of Genetics</strong> <strong>in Vasculitis.</strong> 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). <br>
<br>
Next, Dr. Phil Seo presented on <strong>Chronic Medical Effects of Vasculitis.</strong> In the first half he talked about vaccines. <strong>Flu:</strong> 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. <strong>Varricella Zoster/Shingles:</strong> 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 (&lt;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: <a href="http://www.moodgym.anu.edu.au/" target="_blank">www.moodgym.anu.edu.au</a> (I haven’t checked it out yet, but he made it sound like a good site)<br>
<br>
Next Dr. Mohler shared some info on <strong>Vascular Issues (Heart Healthy).</strong> 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: <a href="http://www.heart.org/mylifechecklist" target="_blank">www.heart.org/mylifechecklist</a> <br>
<br>
I chose to attend the breakout session on <strong>Health Promotion: Managing Remission</strong> with Drs. Gary Hoffman and Sharon Chung. I found this to be very informative. They emphasized <strong>blood and lab tests are super important</strong>. 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.<br>
<br>
The next breakout session I went to was on <strong>Tests for Vasculitis</strong> 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,...)<br>
<br>
After the break there was another breakout session. I went to the one on <strong>Time Management and Energy Conservation.</strong> 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. <br>
<br>
On Sunday I went to the session on <strong>Alternative Medicine</strong> 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. <br>
<br>
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. <br>
<br>
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. <a href="http://www.youtube.com/watch?v=cDDWvj_q-o8" target="_blank">Empathy: The Human Connection to Patient Care - YouTube</a><br>
<br>
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 <em>can</em> 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.<br>
<br>
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. <img src="http://www.wegeners-granulomatosis.com/forum/images/smilies/smile.png" border="0" alt="" title="Smile" smilieid="1" class="inlineimg"><br>
<br>

[HawaiianPrincess]

Such great information! Thank you for your time, Rebekah. You're helping so many of us & sharing valuable information. Stay well...<3

[Val1227]

Thank you so much for posting all this information. It was helpful. Wishing you the best = Valerie dx 9/10

[ohioweggie]

I can't believe I just found this site. thanks rebekah for your post. I wanted to go to the symposium, but it was a little too costly, and at the time didn't think I could handle the stress getting there. All your documented info is amazing!

[Pete]

Hey Buckeye! Where are you from in Ohio. I live in suburban Columbus and am originally from Massillon. Welcome to the forum. Looking forward to hearing more from you.

[rebekah]

Welcome, ohioweggie! I, too, am in Ohio. I just moved from Florida to Columbus. I hope you are doing well. :)

[anandreddy1411]

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 (http://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 (http://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 (http://www.youtube.com/watch?v=cDDWvj_q-o8)

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. :)

Hey,

Very very important information n notes r very observable.. Thanks again