Effect of Wegener's granulomatosis on work disability, need for medical care, and quality of life in patients younger than 40 years at diagnosis.

OBJECTIVES:

To evaluate the effects of Wegener's granulomatosis (WG) on employment status, work disability, and need for medical care of 60 consecutive WG patients aged < or = 40 years at diagnosis.

The rest of this article is here. 

What was found: About 39 percent of the WG sample were on disability, the rest either worked full-time or part-time. Those that worked had a higher frequency of hospital visits.

What I have to say: One year after I had the disease, I worked full-time for six months. My disease was not quiet then. I ended up on cytoxan again for another six months and my doctor was insistent that I didn't work in a regular work environment. The stress and germs from his viewpoint would shorten my life.

I do write and work at home. I have found from talking to other patients that the ones who work eventually have to retire early. I have also found talking to other patients who have WG is that disability is hard to get for us unless we use lawyers. I find that little fact mind-boggling. WG is a rare and can be fatal disease if not treated properly. Plus it is hard to diagnose. Just last year I know of two people who have died of the disease because they were not diagnosed early enough.

Happy Valentine's Day

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

You have the vasculitis

Change in my WG medication

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

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

1. 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.