VF Symposium July 2013

[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

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

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 and makes me sad god knows what is waiting to us anyway i can see that you are going to be the best wg doc

[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, along with a positive attitude, love, faith, hope, and laughter induced by 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."