By Bruce Jancin | Skin & Allergy News - Oct, 2008
"The overall message of our study is that as a clinician you don't have to screen your patients with newly diagnosed [anti-neutrophil cytoplasmic antibody (ANCA)--associated vasculitis] for any underlying cancer on a routine basis," Dr. Mikkel Faurschou said at the annual congress of the European League Against Rheumatism.
See the rest of the article here.
What I have to say: It is very interesting that clinicians don't think ANCA Vasculitis patients need cancer screening. In my experience, there has been kidney cancer from WG patients after using cychlophosphamide. Plus I had a breast tumor that turned out to be benign, while I was taking WG treatment. So there are cases of cancer that do happen to Vasculitis patients. We can be grateful that it is not as common across the Vasculitis spectrum.
Monday, July 25, 2011
Friday, July 22, 2011
Early diagnosis will further add years to life of patients with vasculitis
Dear Editor,
In a recent paper dealing with long term outcome of vasculitis, the authors conclude that "despite recent advances in treatment, patients with ANCA-associated vasculitis continue to have an excess mortality, ..." and ..."it is unclear to what extent improved treatments will have an impact on later mortality" [1].
On the basis of our experience on 101 patients with vasculitis, 94 with histological diagnosis ( 15 classic polyarteritis, 29, microscopic polyangiitis, 24 Wegener granulomatosis and 33 pauci-immune necrotizing glomerulonephritis) diagnosed from 1975 to 2002 with a mean follow-up time of 7 years, we would like to comment that, even if still sub-optimal, patients survival form the onset of the disease has considerably improved over time when compared with the general age-and sex-matched population of the same area [2].
Read the rest of this letter here.
What I have to say: Unfortunately, there are patients who are still dying from Vasculitis disease. But in my humble opinion, this unfortunate circumstance is because it is still hard to diagnose this disease and is not the first disease that comes to the mind of a physician during diagnosis. On the other hand more people are being diagnosed and treated. And more people are living longer lives because of dedicated doctors and researchers are trying to find ways to treat these patients.
In a recent paper dealing with long term outcome of vasculitis, the authors conclude that "despite recent advances in treatment, patients with ANCA-associated vasculitis continue to have an excess mortality, ..." and ..."it is unclear to what extent improved treatments will have an impact on later mortality" [1].
On the basis of our experience on 101 patients with vasculitis, 94 with histological diagnosis ( 15 classic polyarteritis, 29, microscopic polyangiitis, 24 Wegener granulomatosis and 33 pauci-immune necrotizing glomerulonephritis) diagnosed from 1975 to 2002 with a mean follow-up time of 7 years, we would like to comment that, even if still sub-optimal, patients survival form the onset of the disease has considerably improved over time when compared with the general age-and sex-matched population of the same area [2].
Read the rest of this letter here.
What I have to say: Unfortunately, there are patients who are still dying from Vasculitis disease. But in my humble opinion, this unfortunate circumstance is because it is still hard to diagnose this disease and is not the first disease that comes to the mind of a physician during diagnosis. On the other hand more people are being diagnosed and treated. And more people are living longer lives because of dedicated doctors and researchers are trying to find ways to treat these patients.
Thursday, July 21, 2011
Drug May Prevent Chemo-Linked Menopause in Breast Cancer Patients
But, experts say treatment may not preserve fertility, has drawbacks
By Amanda Gardner
HealthDay Reporter
TUESDAY, July 19 (HealthDay News) -- Giving the ovaries a rest when young women with breast cancer are undergoing chemotherapy may help prevent early menopause and preserve fertility.
What I have to say: One of the unintended consequences of Vasculitis treatment is chemo-induced menopause, which can happen to all ages of women. I went into menopause in the first year of my treatment. This problem is a concern to any woman who wants to preserve her fertility.
Wednesday, July 20, 2011
Missoula girl to get kidney donation from sister
Back in spring 2009, Long caught a cough she just couldn't kick. The school nurse sent her home sick the last week of school. Bonnie's mom, Minette Long, immediately took her to their family pediatrician. The doctor was alarmed by Bonnie's persistent cough, blood-red eyes and the bumps on her elbows.
Tuesday, July 19, 2011
Monday, July 18, 2011
Autoimmune mysteries spark ongoing research
NIEHS epidemiologist Christine Parks, Ph.D., spoke to employees and guests May 27 on "Autoimmune diseases: What we know (and don't know) about environmental risk factors and why we care." Parks' presentation addressed current knowledge surrounding environmental risk factors for the nearly 80 autoimmune diseases that affect five to eight percent of the population. She also examined why people should care about these risk factors and the impact of these chronic and incurable diseases on the workplace.
The rest of the article is here.
What I have to say: In 2007 or so a few of the patients in our circle wanted to know if anyone knew or suspected the triggers for their disease. Many of the patients were certain that their autoimmune disease was triggered by workplace conditions i.e. sick buildings, asbestos, organic solvents, etc. Some of the patients told stories of other adults developing other autoimmune diseases while working in the same places.
At the time the researchers were more interested in the genetic causes than the environmental causes. Finally someone is looking into the other half of the situation. Yes, we do have a gene that turns on, but is it something we have or is it something that is turned on by an environmental or industrial risk? In my mind, that is the question.
The rest of the article is here.
What I have to say: In 2007 or so a few of the patients in our circle wanted to know if anyone knew or suspected the triggers for their disease. Many of the patients were certain that their autoimmune disease was triggered by workplace conditions i.e. sick buildings, asbestos, organic solvents, etc. Some of the patients told stories of other adults developing other autoimmune diseases while working in the same places.
At the time the researchers were more interested in the genetic causes than the environmental causes. Finally someone is looking into the other half of the situation. Yes, we do have a gene that turns on, but is it something we have or is it something that is turned on by an environmental or industrial risk? In my mind, that is the question.
Thursday, July 14, 2011
Healthy Living: Blood vessel disease can affect array of organs
By By SANDEEP VARMA
for the Bulletin
During the past few weeks, I have seen a few patients with a rare condition called vasculitis, which is an inflammation of the blood vessels.
There are multiple types of vasculitis — some affect only the skin while others also affect internal organs.
Read more: Healthy Living: Blood vessel disease can affect array of organs - Norwich, CT - The Bulletin
What I say: This article provides good information for new patients. Since this disease has been all consuming on my part, it is nice to see something that I would have liked to have read when I had my first crisis in 2003. Although the information is not indepth, it is accurate and easy to understand.
for the Bulletin
During the past few weeks, I have seen a few patients with a rare condition called vasculitis, which is an inflammation of the blood vessels.
There are multiple types of vasculitis — some affect only the skin while others also affect internal organs.
Read more: Healthy Living: Blood vessel disease can affect array of organs - Norwich, CT - The Bulletin
What I say: This article provides good information for new patients. Since this disease has been all consuming on my part, it is nice to see something that I would have liked to have read when I had my first crisis in 2003. Although the information is not indepth, it is accurate and easy to understand.
Wednesday, July 13, 2011
Contemporary Clinical Medicine: Great Teachers: ANCA Vasculitis: From Eponym to Possible Cause
NIH Video Podcast
ANCA Vasculitis: From Eponym to Possible Cause
What I say: This is an hour long by Dr. Falk, researches ANCA glomerulonephritis and the inflammation process. Anything that Dr. Falk has to say about Vasculitis should be very interesting.
ANCA Vasculitis: From Eponym to Possible Cause
What I say: This is an hour long by Dr. Falk, researches ANCA glomerulonephritis and the inflammation process. Anything that Dr. Falk has to say about Vasculitis should be very interesting.
Tuesday, July 12, 2011
Gala dinner raises grand sum in Lauren’s memory
Jun 17 2011 by Clair Fullarton, Kilmarnock Standard
Lauren Currie, from Kilmarnock, was just 15 years old when she was diagnosed with vasculitis, an incurable group of disorders which inflame and destroy blood vessels. Although she had been poorly on and off for a number of years, she was only diagnosed 48 hours before she sadly passed away.
The rest of the article is here.
What I have to say: I am so sorry to hear about the death of 15 year old Lauren. This disease can attack young children and teenagers too. All my condolences to the family. And, they are doing a good thing for others with the disease.
Monday, July 11, 2011
Psychological aspects of vasculitis
The patient confronted with the diagnosis of vasculitis is likely to exhibit psychological reactions similar to those observed in other chronic illnesses. Research has shown that shock usually accompanies the diagnosis of a chronic life‐threatening illness, and denial can be observed in a number of ways: ignoring the potentially serious meaning of symptoms, leading to delays in seeking medical care; and/or failing to acknowledge the implications of the diagnosis; and/or failing to follow treatment regimes during the rehabilitation phase of the illness.
The rest of this article is here.
What I have to say: I few years ago I wrote an article about Stages of Grief: Dealing with a Chronic Illness. In the article I wrote in layman terms that losing life to a chronic disease is akin to the stages of grief when losing a loved one. As a person with a chronic disease, I have lost my lifestyle of travel, work, and health.
Having to limit my life due to fatigue has stopped us from exploring the world around us. Many of us try to live normal lives or as we say limited normal lives, but it take years to come to terms with our new realities.
The rest of this article is here.
What I have to say: I few years ago I wrote an article about Stages of Grief: Dealing with a Chronic Illness. In the article I wrote in layman terms that losing life to a chronic disease is akin to the stages of grief when losing a loved one. As a person with a chronic disease, I have lost my lifestyle of travel, work, and health.
Having to limit my life due to fatigue has stopped us from exploring the world around us. Many of us try to live normal lives or as we say limited normal lives, but it take years to come to terms with our new realities.
Saturday, July 09, 2011
New horizons for treatment of ANCA-associated vasculitides
The field of ANCA-associated vasculitis therapy is currently undergoing probably the most momentous change since the effectiveness of adjunctive CYC to treat granulomatosis with polyangitiis (Wegener’s) was discovered in the early 1970s [1, 2]. Since 2001 [3], the numerous uncontrolled observations reporting the efficacy of the chimeric monoclonal anti-CD20 antibody rituximab against granulomatosis with polyangitiis, microscopic polyangiitis and Churg–Strauss syndrome have sparked enthusiasm and hope that targeted B-cell therapy might cure ANCA-associated vasculitides. In 2010, the New England Journal of Medicine published two randomized clinical trials, Rituximab in ANCA-associated vasculitis (RAVE) and Rituximab versus cyclophosphamide in ANCA-associated vasculitis (RITUXVAS) [4, 5], that provided the first controlled evidence that at 6 or 12 months of follow-up, respectively, rituximab was as effective and safe as conventional immunosuppressive therapy to control active granulomatosis with polyangitiis and microscopic polyangiitis. In a subgroup analysis of RAVE data, rituximab proved to be even more effective at inducing disease remission for those patients enrolled at the time of a relapse [4].
The rest of the article is here.
What I have to say: Are we ready to change the first line of defense for Vasculitis disease from cychlophosphamide to Rituximab? HECK yes. From talking to other patients Rituximab has less side-effects and puts the patient into remission faster. Plus the patient has less damage to vital organs and can have a normal life with job, family, and kids. Those of us who have used cychlophasphamide are still dealing with damages incurred while trying to get the disease under control. These same patients are still unable to work and usually live very limited lives in isolation.
So I am excited to see this new era of treatment for Vasculitis patients.
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