Sierra Sage

Happy Valentine's Day

2012-02-14T14:17:00.000-08:00

A desert flower for all my fans. May you prosper and be Vasculitis free.

You have the vasculitis

2012-02-13T11:28:00.000-08:00

Change in my WG medication

2012-02-11T10:29:00.000-08:00

Yesterday, I had a talk with my rheumatologist about my blood results. I take a blood and urine test every three months so that we can keep on top of my illness. I want to mention that I have a great doctor because he calls me every time I have a blood test. If you want to know more about Wegener's Granulomatosis (Granulomatosis with Polyangiitis) here is a good article from the Mayo Clinic. Just a side-note: there is NO full recovery from WG. It is a lifetime disease. There are only ways to manage the disease.

Anyway, the imuran/azathioprine that I have been using to manage my disease has caused some toxicity in my blood. The marker MVP is too high. We have been watching that number for years. I have been on imuran for six to seven years. In the last three months the marker has jumped ten points. Here is an article that explains what the blood test means.

In my case if I continue with the medication I will probably get anemic. So thankfully there is another medication that I can use called Cellcept generic Mycophenolate. Since many of the transplant drugs are really good for managing our disease, researchers have found that this drug, which is also used for transplants, is good in keeping the auto-immune system suppressed.

So far I have used cyclophosphamide oral and I.V., methotrexate oral, and azathioprine (imuran) to control the disease. Cellcept and Rituxan are the only two drugs left in my arsenal. But, I am still alive and kicking after nine years of fighting this disease.

To keep the disease under control, researchers learned that using a chemo drug partnered with prednisone suppressed the immune system and kept the disease from progressing. At this time there is no cure for WG. Also, the researchers do not know what triggers the disease. They do know it is two parts. One part is the genetic component and the other part is the trigger. Some people with the genetics are never triggered into the disease.

I am looking forward to three weeks off chemo before I start this new drug. Please, wish me luck.

Investigation of quality of life, mood, pain, disability, and disease status in primary systemic vasculitis

2012-02-07T10:48:00.000-08:00

Objective

To assess quality of life (QOL) and psychological adjustment in primary systemic vasculitis (PSV), and to assess their relationship to disease-related measures.

The rest of this article is here.

What I have to say: Many patients with vasculitis especially during the first year of treatment have said that they needed some type of psychological med to feel better. One of the problems that I had during the first two years of treatment was a reaction to the meds, especially prednisone, and feeling fear. My reactions to prednisone that also caused some of the fear was paranoia, dementia, and mood swings.

Also, I knew a patient that had subglottis stenosis (scar tissue in the throat that eventually closed the airway). It was extremely scary when she couldn't breathe. She also had to have surgery to keep her airway open every three months. In her case, her doctor gave her zoloft to keep the fear at bay.

So I am not surprised that psychologically, vasculitis patients are a mess and need help.

Talking to patients: Barriers to overcome

2012-02-06T09:22:00.000-08:00

BRIAN F. MANDELL, MD, PhD, Editor-in-Chief

We physicians should not assume that patients understand everything we tell them. So say Drs. Anita Misra-Hebert and J. Harry Isaacson in this issue of the Journal (page 127), in which they discuss the challenge of communicating with patients across cultural and other barriers and propose several strategies to improve the physician-patient encounter.

The rest of the article is here.

What I have to say: This is an excellent article on the barriers to communication with the patient and the doctor. In the case of Vasculitis patients, the biggest barrier for communication is the medication. The chemo/prednisone combination causes pred-head (or chemo-head) where the neurons fire sluggishly or maybe not at all. Many patients with these problems caused by meds report that they feel dizzy or they lose concentration.

Two strategies that we can do as patients to get the most from our doctor's visits is to bring questions and then write the answers down. The other strategy is to bring someone to the office with you who can tell you what the doctor said later.

Plus if you forget or just don't know what you should be doing, don't be afraid to call the doctor's office and ask to talk to the nurse.

Ultimately our care is in our hands.

Misdiagnosed: What to do When Your Doctor Doesn't Know

2012-01-25T09:03:00.000-08:00

No one knew what was wrong with Tom Hopper. In 2007, at 64, the Baltimore accounting consultant began losing weight, which he welcomed at first because he needed to go on a diet. But a few months later Hopper was crippled by episodes of uncontrollable vomiting and diarrhea, sometimes for upward of seven hours, which left him dehydrated and delirious. Cramps in his legs were so painful that he often couldn't stand up.

What I have to say: Many of us with Vasculitis disease have been misdiagnosed once or more times before we have gotten the right diagnosis and treatment. Treatment is essential for certain diseases and especially for WG.
This article has some really good info on getting the right diagnosis and treatment.

A question to explore: How do we count the cost of autoimmune disease?

2012-01-13T08:19:00.000-08:00

The associated cost of autoimmune disease has become a significant portion of the rising cost of U. S. health care. This is because of a severe lack of awareness among the general public and medical practitioners, unequal allocation of research funding and focus at the National Institutes of Health (NIH), and a lack of coordinated care and standardized diagnostic tests.

The rest of the article is here.

What I have to say: According to the article auto-immune disease is the tenth killer of women over 65. This includes women with diabetes, thyroid diseases, and Vasculitis diseases. When you take these diseases singly, it doesn't seem that many people; however, if you add them together it becomes certain that auto-immune diseases are rampant in our society.

An auto-immune disease has two components - genetic and environmental. In the Vasculitis research community many of the researchers have looked at viruses and allergies for the environmental component. After talking to many patients with Vasculitis disease, it might be that the missing component may be some type of industrial component such as organic solvents, cilica, sick buildings, or other industrial components in this vein. I have been pointing towards these types of environmental components since my brain started working again after my stint on cytoxan. Many patients agree. The problem is that by the time we are diagnosed, they can't tell what triggered our diseases.

Wegener's granulomatosis presenting as meningitis.

2012-01-12T10:08:00.000-08:00

Methods:We report a patient who presented to the medical emergency services with signs and symptoms of meningitis, but who was eventually diagnosed with Wegener's granulomatosis.

The rest of the abstract is here.

What I have to say: WG and other Vasculitis diseases can mimic other diseases. I know of a woman with Bechet's disease. The doctors thought she had tumors in her brain. After surgery, they discovered lesions caused by Vasculitis disease. After being treated and because of the brain biopsy, she still had problems with walking, talking, and thinking.

Dr. Weil's Anti-Inflammatory Food Pyramid

2012-01-11T10:04:00.000-08:00

Dr. Weil's Anti-Inflammatory Food Pyramid

What I have to say: Vasculitis is an inflammatory disease. Just eating right will help you to slow down the inflammatory responses that makes this disease so dangerous. Since I do have a reaction to beans and soy, I eat one egg every day for protein. Protein is needed to give us that full feeling. But, whatever your health situation, this is a really good pyramid.

Granulomatosis with polyangiitis (Wegener)

2011-12-30T08:51:00.000-08:00

Differential Diagnosis here at Epocrates Online.

This document contains the differences between the Vasculitis diseases. Many times the same meds are used to treat. Just a very interesting document for those of you with the diseases.

2011 Berryhill Lecture

2011-12-28T09:21:00.000-08:00

Stress triggers disease flares in patients with vasculitis

2011-12-27T08:48:00.000-08:00

Study shows psychological health important to controlling Wegener's granulomatosis

In patients with a devastating form of vasculitis who are in remission, stress can be associated with a greater likelihood of the disease flaring, according to a new study by investigators at Hospital for Special Surgery (HSS).

This is the first study to suggest that mental health is a risk factor in patients with vasculitis, a group of autoimmune disorders characterized by the inflammatory destruction of blood vessels. The study, in a form of the disease known as Wegener's granulomatosis (WG), will be presented on Nov. 8 at the American College of Rheumatology's annual meeting.

"When this disease flares, people can be really sick. It often affects the lungs, kidneys, sinuses and nerves. It can cause fevers and rashes. People can die from this illness. It is a very robust, active, inflammatory disease when it is active," said Robert Spiera, M.D., director of the Vasculitis and Scleroderma Program at HSS, who led the study. "When patients are in remission, however, they can do very, very well."

You can find the rest of this article here.

What I have to say: I have an especially virulent form of this disease. When I am the most stressed, I seem to have more problems with infections and the side-effects of the medications. This particular study reinforces what the WG community already knows. When we are stressed, we get sicker.

Vasculitis in Autoimmunity II: Embracing the future of research, treatment, and care

2011-12-24T11:57:00.000-08:00

Interleukin-2 Works for Autoimmune Diseases

2011-12-23T09:38:00.000-08:00

Low-dose interleukin-2 immunotherapy appears to be safe and effective in treating two immune-mediated diseases, two small, uncontrolled studies showed.

The rest of the article is here.

What I have to say: This seems like a new treatment plan for vasculitis patients who have problems with prednisone and other corticosteroids. From the two research studies the patients have done really well with few adverse side effects. I will what to see how this new treatment pans out. It is supposed to target the T cells.

Being There for Your Friend with Vasculitis

2011-12-22T09:13:00.000-08:00

When someone has a friend or family member who has been diagnosed with vasculitis, that person might not know what to say or what to do. Delesha Carpenter, PhD, MSPH helps friends of vasculitis patients understand what it is like to live with the disease in this two-part podcast featuring Dr. Ron Falk, UNC Kidney Center Director and Dianne Shaw, Past President of the Vasculitis Foundation and vasculitis patient. Dr. Carpenter is a Research Assistant Professor in the Division of Pharmaceutical Outcomes and Policy at the Eshelman School of Pharmacy at UNC Chapel Hill.

The Podcast is here.

What I have to say: One of the worst things you can say to a Vasculitis patient who has been under treatment for years is "but, you look so good." The patient hasn't felt good for as long as s/he has been diagnosed. S/he will look differently, usually gaining weight from prednisone, and feel different with fatigue. S/he will be depressed and struggling. The best thing you can do for your friend is to be there and to realize that your friend can never be the care-free friend of the past. This disease does not go away.

Diet Soda & Vasculitis

2011-12-15T13:51:00.000-08:00

Vasculitis is a potentially fatal condition characterized by inflammation of the blood vessels. The inflammation results in unhealthy changes to the blood vessel walls, such as narrowing, weakening, thickening and scarring. Vasculitis can be a temporary condition or chronic. In severe cases the inflammation prohibits blood flow, causing tissue and organ damage. A specific diet for vasculitis does not exist, but it is best to avoid diet soda. Ask your doctor for other dietary recommendations.

It says in the rest of this article that Diet Soda can affect the bones, weight, and caffeine usage.

What I say: I have known for a few years that diet soda is very bad for patients with vasculitis because any processed food or drink can cause more inflammation. Since vasculitis disease is all about inflammation then it is a good idea to avoid soda and particularly diet soda. It is interesting that what I have been doing and saying for nine years is starting to be the norm.

A Guest Post from Izzy Woods

2011-12-02T14:50:00.001-08:00

Vasculitis and Support

When it comes to healing, or getting well after an operation, or treating the symptoms of a chronic illness, there are a dizzying number of opinions offered, and treatments suggested. Your main health care provider will have one set of beliefs. A secondary provider will probably have a different set. Friends and family will “weigh-in”, with suggestions based on what worked with a cousin, co-worker, or acquaintance. Complete strangers will share random, and often disturbingly intimate, details about their own experiences. It can be terribly overwhelming. In addition to the changes in your own body, and in the way people interact with you, due to those changes, there will most certainly be shifts in how you think and feel about yourself.

Very few medical professionals or colleagues will understand these internal changes, and that is where non-medical support becomes vital.

Issues

For people with one of the many forms of Vasculitis, there are multiple issues with which to contend, as the disease can affect the body both inside and out. This means that not only do you feel as if you are being attacked from the inside, but the external changes render it almost impossible to keep the presence of the disease to yourself. The first few months, or even years, after being diagnosed can feel like an incredibly lonely time, and that is when it is most important to seek out other members of the community who can give you advice about how to handle the many changes that are required for maintaining a modicum of health and normalcy.

Vasculitis Basics

Vasculitis is, at its most basic, a disease that manifests as inflammation, and ultimately the destruction, of blood vessels. It can occur in both veins and arteries, and is related to leukocyte migration. The inflammation causes the walls of the vessels to change, which can result in thickening, thinning, or scarring. If the changes within the blood vessels are severe, blood flow to major organs can be drastically impeded, causing serious damage to the organs, or death. There is little known about what causes Vasculitis. Some cases have been tied to allergic responses to medications or exposure to chemicals. Other forms appear as part of other diseases such as cancer. rheumatoid arthritis, or hepatitis C. The disease is not hereditary, and can be chronic or acute.

There are five major types of Vasculitis, with each type affecting a different part of the body. Cutaneous small vessel Vasculitis affects the skin and kidneys primarily. Wegener's granulomatosis affects the nose, lungs, and kidneys. Churg–Strauss syndrome can affect the lungs, heart, kidneys, and skin. Kawasaki disease can affect the skin, heart, eyes, and mouth. Finally, Buerger's disease can affect the arteries and veins of the legs.

Isolation

The variety of symptoms and the unclear causes of Vasculitis, often make it difficult to diagnose. Treatment often involves the heavy use of immune suppressant drugs. Unfortunately, while the treatment can reduce or eliminate the symptoms of Vasculitis, it also reduces the ability to fight off other infections or diseases. This means that for many Vasculitis patients, the disease causes feelings of alienation and isolation, and the treatment necessitates a certain level of isolation, as the immune system is rendered unable to defend itself against infections like the common cold. In a body that is already compromised, a cold can become something far more serious. This is where support within the Vasculitis community becomes invaluable.

Seeking Support

There are multiple support groups around the world. Many of these groups operate via the internet, which reduces the need to travel, and thereby limits Vasculitis patients’ interaction with germs or bacteria. Many of the groups have a particular focus, and often include a combination of patients, medical staff, and family members. They are excellent forums for information, discussion, and most importantly, the emotional support that is not always available within a Vasculitis patient’s home community.

There are currently 74 organized support groups operating in the United States, Canada, the UK, and Australia. These groups have as many as three hundred members or as few as two or three. There are multiple smaller groups in cities around the world as well, which can be found through local hospitals or hospice organizations. The Vasculitis Foundation, the Vasculitis Clinical Research Consortium, and the Vascular Disease Foundation, all offer links to support groups around the world, as well as providing their own forums for discussion. Living with any illness is incredibly difficult, and Vasculitis has its own special brand of pitfalls.

Finding friendship and support within the community is vital for maintaining a positive attitude. A positive attitude is vital for maintaining your sense of self.

Izzy Woods is a compassionate and health-conscious freelance writer. Her day job involves writing for MSC cruises, but when she isn't doing that she's at the gym or writing for her food blog.

Stress triggers disease flares in patients with vasculitis

2011-11-07T08:21:00.000-08:00

Study shows psychological health important to controlling Wegener's granulomatosis
In patients with a devastating form of vasculitis who are in remission, stress can be associated with a greater likelihood of the disease flaring, according to a new study by investigators at Hospital for Special Surgery (HSS). Find the rest of this public release here.

What I have to say: Amongst the WG community, the patients know that stress is a real problem for them. Patients with higher stress around school, work, or home life, are more likely to flare (a flare is when the disease becomes active again). Those with less stress have less flares. Before this study the knowledge was considered anecdotal, although true.

Kids' deaths still mystery

2011-10-26T08:08:00.000-07:00

A LETHAL FUNGUS was found in the brain of a Brooklyn boy who mysteriously and suddenly died at Columbia Presbyterian Medical Center, the Daily News has learned.
The shocking discovery marked at least the third child's death that heartbroken parents believe may have been caused by spores released during construction at the prestigious hospital.
The rest of this article is here.

What I have to say: The boy with this lethal fungus was being treated for Wegener's Granulomatosis, a vasculitis disease. It seems he picked up the lethal fungus from the hospital, possibly aspergillus. This is a sad and unfortunate circumstance because if the child had not been exposed to aspergillus, he would have lived a fairly long life. From the article, this child was the second death due to a lethal fungus at that same hospital.

Coping with Autoimmune Disease w/Children: Tips from a Parent Who's Been There

2011-10-13T09:02:00.000-07:00

My 6 year old sat beside me on the couch, tears streaming down her little face. “When we start talking about this my eyes water like I'm gonna cry!” she wailed, and buried her face in my arm.

The rest of the article is here.

What I have to say: This is one of the best articles I have read about how autoimmune diseases affect family and especially children. It is a little heart-breaking and really true.

Among the invisible people

2011-09-20T10:25:00.000-07:00

"It’s an autoimmune disease; it’s very, very difficult. It’s highly unusual, the nature of it. Lupus has shown up once or twice with connective tissue disease, vasculitis [inflammation of the blood vessels] of the brain"

The interview with Robert Ellis Gordon is here.

What I have to say: Even though we have serious auto-immune diseases, we can also contribute to the world. I have some political differences with this writer, but I admire anyone who is able to do hard things well.

Internist diagnoses the disease to save your life

2011-09-19T13:54:00.000-07:00

MC News - You may think he doesn't hear you or seems preoccupied. Well, in fact, he is, he's studying your medical data in order to diagnose the disease you have and to save your life.

His name is Doctor Jacobus Steyn, chief of internal medicine at the Brockville General Hospital. Steyn's focus is on the internal organs, heart, liver, kidneys, lungs, etc., and how they function.

The rest of the article is here.

What I have to say: It is very encouraging to find medical professionals like Dr. Jacobus Steyn. Vasculitis is one of the really hard diseases to diagnose. Keep up the good work Dr. Steyn.

Acute abdomen in a patient with ANCA-associated vasculitis

2011-09-14T10:37:00.000-07:00

A 49-year-old man complained of increasing pain in the lower left abdomen. Three weeks previously joint pain had developed, and in the last 7 days the patient had noted a cutaneous rash at the lower legs.

The rest of this abstract is here.

What I have to say: WG or ANCA associated Vasculitis can affect any organ of the body that has small to medium blood vessels. Even though it is rare in the gastrointestinal area, it can certainly affect the stomach and intestines. At this time this disease cannot be cured, only suppressed through immune-suppressant drugs.

Rituximab in ANCA-associated vasculitis: a revolution?

2011-09-13T09:22:00.000-07:00

On 19 April 2011, the US Food and Drug Administration (FDA) approved rituximab in combination with glucocorticosteroids for the treatment of two forms of anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (AAV): granulomatosis with polyangiitis (Wegener’s) and microscopic polyangiitis. Rituximab is the first FDA approved drug for ANCA-associated vasculitis.

Rest of this article is here.

What I have to say: From talking to patients who are taking this treatment, they have less side-effects than using cyclophosphamide. This is a great break-through for Vasculitis patients.

Nashville man says wife died from 9/11 Ground Zero illness

2011-09-12T08:48:00.000-07:00

NASHVILLE, TN (WSMV) - Nearly 2,800 people died in the World Trade Center attacks. And many who managed to escape that day, only to battle illness down the road, believe it's connected to their exposure at Ground Zero.
One Nashville man says his wife is among those 9/11 forgotten victims.
The rest of the article is here.

What I have to say: Laura later died of pulmonary Vasculitis. If they had been able to diagnose her sooner, she may have been able to survive. In my personal opinion the people that were there for 9/11 and the people who volunteered to help clean up the area should be tested for Vasculitis. With a major air event such as this, Vasculitis or lung cancer should be the first thought of the medical profession.