Current New England Journal of Medicine...

[Palmyra]

Hey there to the group! Good news in the world of publicity regarding the demon/monster ANCA associated vasculitis. In the current issue of the New England Journal of Medicine, letters to the editor focus on debate between some of the world's formost experts on the issue, regarding treatment with Rituxin vs Cytoxin.

I personal do not think it wise for us to try to draw personal conclusions from the content of the letters themselves, but instead we should celebrate the fact that this disease and debate is being focused on in one of the world's most read medical publications. That means more info, more attention, more advocacy to all the little local doctors out there that know almost nothing about this condition. Hurray!


MMS: Error

[Sangye]

Thank you so much for posting that, Palmyra. I found each letter very interesting, but am especially glad for the last letter by Dr Stone and Dr Specks that speaks to the questions raised by the others.

[drz]

Hey there to the group! Good news in the world of publicity regarding the demon/monster ANCA associated vasculitis. In the current issue of the New England Journal of Medicine, letters to the editor focus on debate between some of the world's formost experts on the issue, regarding treatment with Rituxin vs Cytoxin.

I personal do not think it wise for us to try to draw personal conclusions from the content of the letters themselves, but instead we should celebrate the fact that this disease and debate is being focused on in one of the world's most read medical publications. That means more info, more attention, more advocacy to all the little local doctors out there that know almost nothing about this condition. Hurray!


MMS: Error

While in hospital this week I had a nursing student who was looking for info on Wegener's disease. She went through all her nursing text books and found a total of two sort paragraphs. She was able to find several pages on internet. I know of another case where an acquaintance was recently diagnosed and asked his nephrologist for info on Wegener's. He copied a page out of a text book and told the patient now you know as much about Wegener's disease as me. A local emergency room doctor told a family member he didn't know anything about Wegener's disease and it was NOT his job to know about it even though patients with Wegener's disease will be coming there for emergency care on an on going basis. fortunate not all doctors have this attitude. My internist thanked me for putting her on mail list by vasculitis foundation so she could learn more about it. To me that is the sign of a good physician.

Is the number of Wegener's disease increasing or people just becoming more aware of it and finally starting to recognize it so they can diagnose it more.

[Palmyra]

In my first post, I didn't copy the web site.....here it is:

http://www.nejm.org/doi/full/10.1056/NEJMc1009101


Regarding those in the medical field that have an open mind to learning more, they are to be treasured! I always hold suspect anyone that is not able to say, "I don't know, but I can try to find out."

The above site is a bit of a debate between some of our great minds in the field of vasculitis research. So glad to see it in a prestigious publication, (and not on the back pages, as well!)

[me2]

Palmyra , thanks for posting this info. Very interesting.

[marta]

While in hospital this week I had a nursing student who was looking for info on Wegener's disease. She went through all her nursing text books and found a total of two sort paragraphs. She was able to find several pages on internet. I know of another case where an acquaintance was recently diagnosed and asked his nephrologist for info on Wegener's. He copied a page out of a text book and told the patient now you know as much about Wegener's disease as me. A local emergency room doctor told a family member he didn't know anything about Wegener's disease and it was NOT his job to know about it even though patients with Wegener's disease will be coming there for emergency care on an on going basis. fortunate not all doctors have this attitude. My internist thanked me for putting her on mail list by vasculitis foundation so she could learn more about it. To me that is the sign of a good physician.

Is the number of Wegener's disease increasing or people just becoming more aware of it and finally starting to recognize it so they can diagnose it more.

On that note.... I stayed up last night (pred insomnia welcome home) and put together the outline for OUR book. I think it is time my friends. I will send you personal notes with the outline and questions, and my contact info (I'm just hesitant to post it on the internet for anyone to see) but if I happen to miss you please please let me know and I'll send you the package.

Time to put something together for patients, family and friends, doctors, med students and medical practitioners from the patient's perspective.

Let's change the world of Wegener's.

[me2]

Great idea Marta. I would be a heavy contributor to the chapter "What I WISHED my doctor understood about Wegener's but doesn't seem to". In fact I could write a whole book on that. ha
I recently asked my doc what to do if my disease was flaring up two weeks after infusion like it did this time and he said " Go to the ER"
Well, given the statement above about the ER it adds more insult to injury. I have been to ER's before. They don't treat WG, nor do i really expect them to. The are to make you stay alive and stable enough that your WG doc should take over the next day to get you on track. My guy doesn't seem to understand that or what I fear might be closer to the truth is he doesn't want to deal with WG and was just blowing me off.
He tends to see me as a complainer I think because he profoundly doesn't understand how serious untreated WG becomes. Uh oh, I'm starting to write the book .Sorry. ha

[drz]

On that note.... I stayed up last night (pred insomnia welcome home) and put together the outline for OUR book. I think it is time my friends. I will send you personal notes with the outline and questions, and my contact info (I'm just hesitant to post it on the internet for anyone to see) but if I happen to miss you please please let me know and I'll send you the package.

Time to put something together for patients, family and friends, doctors, med students and medical practitioners from the patient's perspective.

Let's change the world of Wegener's.

If you don't want to post it on open forum you could send it to those who want it as a private message on here.

[drz]

Great idea Marta. I would be a heavy contributor to the chapter "What I WISHED my doctor understood about Wegener's but doesn't seem to". In fact I could write a whole book on that. ha
I recently asked my doc what to do if my disease was flaring up two weeks after infusion like it did this time and he said " Go to the ER"
Well, given the statement above about the ER it adds more insult to injury. I have been to ER's before. They don't treat WG, nor do i really expect them to. The are to make you stay alive and stable enough that your WG doc should take over the next day to get you on track. My guy doesn't seem to understand that or what I fear might be closer to the truth is he doesn't want to deal with WG and was just blowing me off.
He tends to see me as a complainer I think because he profoundly doesn't understand how serious untreated WG becomes. Uh oh, I'm starting to write the book .Sorry. ha

I have generally had good experiences at ER rooms even though they don't know much about Wegener's. I ended up in ER on Nov 15th and the ER doctor called my treating rheumatologist and discussed my case and how to best treat me. My rheumatologist recommended they treat me in local hospital for bladder infection and dehydration and also recommended evaluation procedures to see if more treatment was needed for Wegener's. I felt very comfortable with the plan and assured by the frequent consultation my internist and rheumatologist had on a daily basis or more as needed. It saved me a long trip to the big city hospital. I have ended up with infections the last two times at big city hospital because they have lots of interns and residents as a teaching hospital and you see many specialists and larger number of staff so 50 plus people go through you room daily. They also have more difficult cases and sicker people because of their specialists with expertise with more exotic diseases like Wegener's.

I have had ER doctors tell me I don't really know much about Wegener's disease or what it might be doing to your body now but my examination doesn't indicate anything I can see that presents any imminent danger to you right now. I will send all the information of the work up to your rheumatologist and he can contact me tomorrow if he sees it differently. The ER doctor also offered the option of long ambulance ride to the big city hospital if I really felt I needed to go there right now. I felt reassured enough to stay where I was as long they expressed willingness to transfer me if it was felt necessary.

Generally if we are traveling or if we live anywhere other than next door to our Wegener specialist we are dependent upon local ER service when we have a new problem or symptom so educating them is certainly in our best interest. Most of my ER visits have been due to symptoms or side effects of my treatment for Wegener's disease and not the disease itself.