It's my birthday

And, I have survived another year.

More than anything I am grateful that my doctors are pro-active about my health problems. Wegener's Granulomatosis can be a scary disease because it can affect any organ in the body.

I am also grateful to my husband for taking care of me when I was extremely sick. As for the present, he is trying to get me back on my feet again mentally and physically. After taking chemo drugs and prednisone, it can be a long road back.

It has been six years and eight months since I was diagnosed with this disease. I am still kicking.

Clipart from .iband.com

How Does Vasculitis Affect You?

Guest Post by Kat Sanders

Vasculitis is the common term given to a group of diseases that is characterized by the inflammation of the blood vessels. It is pretty rare, but if it affects you, it could become serious depending on the extent to which your blood vessels are affected. In general, Vasculitis patients’ white blood cells penetrate the walls of their blood vessels and cause damage to the tissue that surrounds them. Besides this, they also obstruct blood flow to the organ in which the vessels are located.

Vasculitis is sometimes caused by an infection or as a side-effect as an adverse reaction to a drug. But in most cases, no one knows why it occurs and why the body’s own immune system turns against it. Although there is no known cure for Vasculitis, it is not always life-threatening. But it is still dangerous because:

• Not many people know that such a disease exists and there is a high probability that they will not recognize the symptoms when they start to show.
• It may take up to a year to correctly diagnose Vasculitis through physical examinations, X-rays, blood tests and blood tissue samples.
• The symptoms are not always present and so, may be misleading.
• People with this disease sometimes look very healthy.
• It can only be managed and not cured.
  

The severity of the disease depends on the size of the inflamed blood vessels and the organs in which they are located. Inflammation in vessels leading to your heart, lungs, or kidneys may be more serious and even lead to death if not managed properly.

Vasculitis is said to slightly affect men more than women and Asians more than any other community. (*Editor note: In Europe and the U.S., vasculitis affects mainly Caucasians. China has the fastest growing vasculitis sufferers at this time.) If you think you or anyone you know may be exhibiting a few symptoms of this disease, do not hesitate to see a good doctor.

By-line:
This article is written by Kat Sanders, who regularly blogs on the topic of online engineering degree at her blog The Engineering A Better World Blog. She welcomes your comments and questions at her email address: katsanders25@gmail.com.

Editor notes by Cynthia.

Latest News in a WG Patient's Life

This latest news has been under the radar for about four years. My immune system showed some problems after I finished a course of cyclophosphamide (oral). I took this drug for six months before I went to imuran.

Anyway, I have been in remission for awhile, but my doctor has been more concerned about keeping my disease under control. In June 2009, my doctor finally decided that I needed to have some lab work to further understand some of my WBC numbers. Three of my gamma globulin numbers were so low that we decided that I should see an immunologist.

Since I deal with Tricare, I need to have a referral to see specialists. In late July, I saw an immunologist. One of the problems with dealing with an immunologist in a sparsely populated state is that the immunologist does not have the experience dealing with my type of problem. He did have the clinical background so we are doing several tests to see how my immune system is reacting, which includes blood tests and a patch test.

I will know what to do after the tests in late August. The immunologist is in communication with my rheumatologist, which is a good thing.

I still don't know what to think about this latest development. It is obvious in my limited experience that the chemo has caused this problem. I have talked to other patients who have had other problems caused by continued use of cychlophosphamide. (cytoxan)... One patient had kidney cancer and the other patient had a slowed digestive tract.

It seems from my viewpoint that if I have problems again with Wegener's that I will have to use another drug to get it under control. I don't want to borrow trouble... but, this drug (cytoxan), which is the gold standard in keeping WG under control might not be a good thing for me.

It has been six and a half years since I started this journey with Wegener's Granulomatosis. I still feel okay. I am still trying to stay well or as well as I can. I am grateful that I am still alive and still kicking.

Vasculitis: lessons learned

Here is an important editorial by Philip Seo in the "Current Opinion of Rheumatology."

Very important points in this editorial are that cychlophosphamide is the best current treatment for run-away vasculitis, that trials outside the US have provided important information about vasculitis disease, and that the phenotype (or body type) of the individual patient needs to be taken into consideration when treating vasculitis.

My opinion: It sounds like that rheumatology (treatment of such disease like vasculitis, arthritis, etc) is learning some valuable lessons in treating my disease and others in the same category.

Germany Vol. One Photos

Germany Stock Photos (Landstuhl, Kaiserslautern, Spangenberg, etc.)

The photo on the left is part of the photo package.

80 photographs in TIFF format. You can edit any of these formats to fit your project. Because the photos are in TIFF format, the pixels have depth and clarity not found with JPEG format. Each photo is close to 9 meg. The file contains information about each photo.

The pictures were taken with a CD Mavica digital camera by Edward "Otto" Tune

These eighty photos are on a Light Scribe CD in a paper envelope. You can buy them on the sidebar. If you like this item, we may be able to offer other photos from this same photographer, including trains, desert scenes, etc.

Photos come from these areas in Germany:
Kaiserslautern: The German word Kaiserslautern means the Kaiser's purity. Kaiserslautern received this name because it was the Holy Roman Emperor Frederick Barbarossa's favorite hunting and fishing area. Another nickname for Kaiserslautern is Barbarossa town, referring to the same Emporer.

Several towns around the city have Celtic tombs (Rodenbach, and Miesau) that are about 2,500 years old. Plus there are old military enforcements dating back to WWII. Just a few kilometers from the city is an active military base - Ramstien AFB. This base still has several soldiers, airmen, and NATO soldiers that live and work there.

Landstuhl: Landstuhl is the German word for county seat. This town is filled with government buildings for the Rhineland-Palantine area. The largest military hospital in Europe (Landstuhl) hospital is near the city.

Nanstein Castle: Burg Nanstein is also called the Landstuhl castle. This castle was built by the Holy Roman Emporer Barbarossa in 1160. The castle was taken by the Knights of Sickengen through marriage in 1474, who were Protestants. Franz Von Sickengen, trying to put the area under Protestant rule attacked one of his neighbors. In retaliation three Princes of the Holy Roman Empire (Catholic princes) attacked the castle and killed Franz Von Sickengen (1523). His sons and grandsons rebuilt the castle, but it was blown up by the Palantine Elector in 1668.

Since 1856, the Sickingen family and local members of the community have excavated these ruins. The inner courtyards have become a popular place for festivals and rock concerts during the summer. It has some beautiful views from the third level of the castle

Also, Spangenberg and some Roman ruins found along the autobahns.

Terms of Use: All images are in a TIFF format and can be modified for commercial or non-commercial use. Once modified please include a photo credit, such as "Photo courtesy of Edward "Otto" Tune."

If you want to redistribute these photos (coffee mugs, mouse pads, etc), please contact the photographer for permission at ottotune@gmail.com.

Long-term management of patients taking immunosuppressive drugs

Denise C Hsu, Immunology Registrar, Department of Immunology, Concord Repatriation General Hospital, Sydney; and Constance H Katelaris, Professor, Clinical Immunology and Allergy, University of Western Sydney

Summary

The number of patients taking immunosuppressive drugs for the management of autoimmune inflammatory conditions is increasing. The general practitioner needs to be active in preventing, monitoring and managing the adverse effects of these drugs even long after the treatment has ceased. Monitoring is required because immunosuppressive drugs increase the risks of infection, malignancy, cardiovascular disease and bone marrow suppression. Some drugs have additional risks which require specific monitoring. Vigilance is needed as adverse effects may have atypical clinical presentations.

The rest of this information is here.

My comments: Another problem with long term immunosuppressive drugs like cychlophasphamide is that the patient can only take this drug so long without adverse affects. It can cause cancer in the bladder and possibly the kidneys. So the doctor (rheumatologist or gp) need to keep this in mind when treating any chronic disease and especially vasculitis.

What you don't know can kill you!

A family turns its pain, tears into a weapon against rare disease

BY KIMONE THOMPsON, Senior reporter Special Coverage Unit

THEY say what you don't know can't hurt you. But in the case of the Creary family, who lost a loved one to the little known disease vasculitis, ignorance proved deadly.

If they had been better guided by the medical doctors from whom they sought attention, their only son Ricardo Lee could have had more time with them, or at least have been more comfortable in his last days, the family is convinced.

"That has been painful, very, very painful because we sought the best medical treatment ever," says bereaved mother, Olive Creary. "It wasn't a case where he was ill and nothing was done. We went to Florida like three times to see the dermatologist, he went to Cleveland, Ohio where the Vasculitis Centre is located (but we didn't know it at the time), and when he wasn't getting any better, there was just no mention of seeing any other specialists.

The rest of the story is here.

My comments: I feel so badly for this family. It is something we tell newly diagnosed patients the importance in having an experienced Vasculitis doctor. Most doctors do not have the experience to treat us.

Familial Churg-Strauss Syndrome in Two Sisters*

Authors: Naomi Tsurikisawa, MD, Sonoko Morita, MD, Takahiro Tsuburai, MD, Chiyako Oshikata, MD, Emiko Ono, MD, Masami Taniguchi, MD, Hiroshi Saito, PhD, Yukiyoshi Yanagihara, PhD, and Kazuo Akiyama, MD

Abstract:
Churg-Strauss syndrome (CSS) is an uncommon systemic vasculitis with an increase in the number of eosinophils in the peripheral blood and tissues. Its pathogenesis is unknown, and there is no evidence that genetic factors influence susceptibility to this disease. We present a case of familial CSS in two sisters with atopic-type bronchial asthma and negative perinuclear anti-neutrophil cytoplasmic antibody results. We investigated the human leukocyte antigen typing of the sisters and their six living siblings but found no evidence for heritability of CSS. To our knowledge, this is the first report of familial CSS.

The rest of this article is here:

My comments: It has only been recently that there have been reports of familial Wegener's Granulomatosis and now the first case of familial CSS. A few patients including myself point to industrial chemicals, etc for this increase in vasculitis disease. At this time, there is no known trigger for these diseases.