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.

Fishing is good for what ails you

Will Atkins 27.MAY.09

David Cosner suffers from Wegener's Granulomatosis, a rare and life-threatening autoimmune disease. Gazette writer Joanne Foote has chronicled his struggles in a couple of articles. A graduate of Bowie High School, he started college last fall at Texas State University in San Marcos, and made the Dean's List in his first semester.

David is hooked on fishing and started a fishing club, the Texas Bass Cats, at Texas State. He had to miss a fishing tournament due to a health setback that put him in the hospital over spring break.

The rest of this story is here.

My comments: It is good to hear about Wegener's Granulomatosis patients that are doing well.

American Idol - I've had enough

There were two years when I loved watching American Idol. I enjoyed Randy and Paula's comments. I adored Simon's testiness. However, that changed when Chris Daughtry was voted off about two years ago.

Chris D. is now a familiar voice on the radio and that year's winner has disappeared into a cloud of obscurity.

I am only going to say this once. And, it is my personal opinion. There are too many teenage girls being allowed to vote. They should have to be 18 to vote. If not, then these teeny-boppers should only be allowed to vote once.

Why? Last night on American Idol (it was the only thing on TV I could stomach), Kris won and Adam lost. No... I have not been following American Idol. And NO I won't be following Idol next year.

So Adam if you ever get around to reading this blog, I think that you have a GREAT future in store for you. You have the voice (resonant and range). You have the charisma. And, you have the looks (fallen angel).

When I saw you sing the songs of Queen and rocked with Kiss, I was totally amazed. The future is at your feet.

I was even impressed with your good sportmanship. In a few years, when everyone has forgotten the American Idol winner of this year, you will be up there on stage.

Living in the shadow of a silent killer

Michelle Hopkins, Richmond News
Published: Friday, May 15, 2009

Looking at fitness instructor Cheryl Sharpe, what you see is a slim, attractive woman who exudes health and vitality.

However, her healthy exterior belies the fact that the 34-year-old lives with Vasculitis, a rare disease that could kill her. Vasculitis is a family of 15 rare diseases.

The rest of this story is here.

My Comments: The reason that I like this story is that if you talk to any WG patient, they have a much similar story. Usually they had good health until suddenly they began to get fatigued with lungs, sinus, and/or kidney symptoms. WG is an auto-immune disease, which means that something triggers the immune system to start attacking the body. WG is still a mystery disease because the researchers still do not know what triggers it.

In my case I used to hike up and down the hills and mountains of Germany. When I became ill, my doctors were convinced that if I hadn't been in such good health that I would have died from the disease.

Now I am chunky from the meds. But, when you look at me, you would not realize that I have a chronic disease.