My Vasculitis Story: Not the final chapter

This morning I was listening to "How far is heaven" sung by the Los Lonely Boys. I love the song, but I am pretty happy that heaven is much farther away today than it was that first year.

After I finished 12 courses of IV cytoxan, my doctor put me on methotrexate. This medication had its own problems. I was on 12.5 mg, which is a low dosage, but my stomach could not tolerate it. I have talked to other patients who have been on methotrexate and they are on 2x the amount I was. My doctor kept me on this medication for a year, but it didn't hold the inflammation.

At the same time I was started on lisnopril for my kidneys and high blood pressure. My nephrologist in Las Vegas Dr. Gross, would check me and then shake his head. I was still around 3.0 creatinine level. Plus later in the second year my creatinine levels started to rise (3.3).

Also both my husband and I started looking for jobs. It was a very hard time because my husband had not had a job for almost two years. He had spent most of that time taking care of me. I did get a job, but it was too early for me to work. I started a job with a loan company as a loan officer. I worked for them for six months before I started to decline again.

Back to the lisinopril, I started to vomit every day after I started taking it. I couldn't gain any weight and was still underweight even though I had been on prednisone for two years. Finally, my rheumatologist realized that it was the lisinopril causing my problems. As soon as I got off this med, my creatinine levels started to drop and I quit vomitting. I started to gain weight.

My husband found a job in Carson City. I followed him there.

Just a note: It had been two years and I was still dealing with active disease. I did not go into remission until July of 2007. My disease wasn't even quiet. I was very fatigued. When I was working, I would come home, eat, and then go to bed (around 7 p.m.). I would wake up at 6 p.m. and start again. The only days that I seemed to feel better was on the weekend when I slept most of the days away. As I said again, I was too hopeful about my recovery. I hadn't recovered yet.

In Carson City I became ill again. This time I had secured my rheumatologist (Dr. Scully) before I moved. As soon as Dr. Scully looked at my labs he was really worried. He put me on oral cychlophosphamide at 225 mg for six months. Plus my prednisone went up to 40 mg. (I talked him out of 60 mg because of my reactions of before) And yes, I had some toxic reactions to the meds near the end of the six months.

Even more, I began to gain weight. My nephrologist told me that I would have to control my eating. I finally had to tell him that I was eating less than I ever had before... And since my special kidney diet included white rice and white bread, these items were not helping my weight gain. I have been vindicated because this year when my imuran was reduced I lost ten pounds almost immediately.

In addition after the second year of WG, I had a tumor in my left breast, which I had to have removed. Thankfully it was benign, but my husband and my doctor were really worried about it. Could it get any worse?

Actually it got better. In the early part of 2007, I began to listen to Cindy about using Omega 3s for inflammation. Up to this time, my rheumalogist was very worried about my inflammation markers. The inflammation had stayed high for almost four years. No matter what type of mediction or combination, the inflammation was too high.

Also, whenever I talked about getting another job, he would ask me if I really wanted to take the chance. It was too easy to get infections, germs, bacteria, etc. from the general population. He wanted me to stay as isolated as I could.

So I began to give Omega-3 a try. I began to take it three times a day. At the same time my rheumatologist changed my meds to imuran and began weaning me from the prednisone again. In one month we saw a significant drop in my inflammation markers. I thought Omega 3. My doctor thought imuran. But, something was working... finally...

Before my doctor wouldn't tell me my chances. But, just a few months ago he said I should live to my 70s and beyond.

In July 2007 I was officially in a chemical remission. We still have scares. The swine flu (any influenza for that matter) comes to mind. Oh yes, and I had shingles. Also, I have had problems with my WBC (white blood count) and RBC off and on through the entire period of six years. If my WBC doesn't change after my imuran was dropped, I might have to take shots... again. I hate shots.

Anyway, thankfully my final chapter is not over yet. I still have many years to live. And maybe you'll see my writings again someday.