Ken’s Story

My name is Ken. I’m better now, but I spent 12 months battling Churg Strauss Syndrome. I’m telling my story below in the hope that it will be helpful to others going through the same thing. Of course, these are just my personal recollections, they are not intended in any way as medical advice. So, with that caveat, here’s the scoop on Churg Strauss from my perspective.

How it began

I had some dental implant work done and the procedure was a bit messy because the implant head fractured and my implant dentist had a tough time. Anyway, a few hours after I got home I developed a sudden rash around my ankles. My dentist thought it was an allergic reaction to the antibiotic. I took Benedryl for a day or so and it went away. I thought no more about it. About a week later I spent a day painting a room in our house, and that evening as I showered I noticed the rash had reappeared. It had developed during the day. It was a Sunday, so I stopped by my medical practice and saw the doctor on duty. He immediately mentioned vasculitis. It was the first time I had ever heard the word, and he explained that it was an autoimmune reaction that attacks blood vessels. On the Monday I saw a dermatologist, who immediately pronounced the rash “probably produced by something internal, it’s out of my area”. He started me on prednisone and sent me to see a rheumatologist.

My Rheumatologist

I belong to a large medical practice, so all the specialists are in-house and it was easy to see a Rheumatologist. He was new to the practice. (By now, of course, I had been Googling vasculitis like crazy. I discovered there were many different forms, but the one that most closely matched my situation was a form called Churg Strauss.) I explained my full story to my Rheumatologist. I explained the rash, how it had occured. I also mentioned that a few years earlier I had surgery for nasal polyps. There was an history of asthma in my family, and although I had never had full asthma I had been suffering from light bronchial asthma for several years . He ran blood tests, which showed I had a very high eosinophil level. By now I was also having occasional blurry vision episodes, and also numbness in my palms and ankles. He told me that taken together with my medical history, my symptoms could be a form of vasculitis called Churg Strauss (thanks Google!) He said it was very rare, that he had never actually seen a case so was out of his depth, but he referred me to a Churg Strauss specialist in New York City. He said I must continue to take prednisone, a standard first line treatment for autoimmune problems. I did not realize it at the time, but I would be on prednisone for 12 months. I made an appointment to see the New York City specialist.

The official diagnosis

It was a few weeks before I got to see the New York City specialist, and by then my symptoms were much worse. I had difficulty breathing and walking, with numbness and discoloration of the feet. Also, I had swelling of the face. The specialist reviewed by medical history and blood tests, gave me a physical exam, and then officially confirmed I had Churg Strauss. He said he had seen about 40 cases in his entire career. He also said I had an aggressive case of the disease and so wanted to take strong action by putting me on Cytoxan. This is a drug first used for cancer patients, but later found to be very effective for autoimmune conditions. He explained there were “milder” drugs that could be used, but he felt we should treat the condition agressively from the beginning.

Cytoxan

I took Cytoxan for about 2 months and continued to take the prednisone which was now up to 60mg per day. After I phased off the Cytoxan my blood tests showed a significantly reduced eosinophil level. So progress was good. My feet and lower legs were still numb, which made if difficult to walk, and as a side effect of Cytoxan I lost a lot of my hair. A few weeks after stopping the Cytoxan I began a very slow reduction of the prednisone – a process called “tapering” and during this time my specialist put me on Imuran. I had a few attacks of breathing problems, and even an apparent return of the ankle rash, but my specialist explained that this was probably a reaction to the Imuran and so I stopped taking it. He was right. However, my numb feet caused a totally unnecessary complication.

Unnecessary and annoying

One day, walking down some steps in my house with my numb feet, I tripped and tore my Achilles tendon. Long use of prednisone has several side effects such as an increased appetite and mood swings and even depression, but one that is not mentioned much is tendon weakness, and especially the Achilles tendon. This makes it prone to injury. I went through surgery to fix the tendon, followed by about 4 months of recovery and physical therapy. During this time I continued to slowly taper the prednisone. But the tendon injury was unecessary, annoying and an upsetting complication.

Nutrition

While I was at home in a cast recovering from the tendon rupture I had a telephone consultation with a nutritionist. I explained that I was specifically interested in any diet that would help reduce inflammation. Churg Strauss is an inflammatory autoimmune condition, so I was interested in anything that could help reduce inflammation. She said that such a diet exists and gave me the basic rules. Here’s what she said (and what I did). Don’t eat anything that’s made with white flour – no bread, no cakes, no pastries, no pasta. But whole wheat flour is ok, so whole wheat bread is ok. And whole wheat pasta is ok. No potatoes. Cut way back on red meat, try to eliminate it if possible and eat fish and chicken instead. Eat lots of fruit, especially fruit rich in anti-oxidants such as berries. No cheese. Eat cereals rich in flaxseed. I also discovered a special very dark chocolate that’s 60% or more cocoa content. It’s advertised as rich in anti-oxidants. I checked this one with my Churg Strauss specialist in New York City and he told me, “go for it.” I did.

Recovery

At about the same time I recovered from the tendon rupture I finally got myself off the prednisone. In the end I was tapering very slowly with a reduction rate of just 0.5mg per week. The whole process had taken over 12 months. Of course, I had frequent visits to my rheumatologist during the whole time. He was the primary doctor who managed my case, and he carefully monitored my condition with blood tests and chest X-rays to check lung conditions. As required, he also sent me to other specialists – a cardiologist to check heart condition, a dermatologist for a skin biopsy of the rash, a neurologist to check for nerve damage, and a nephrologist to check kidney function.

Hair

Not only did my hair grow back, but it grew back thicker, richer and slightly darker than before. My friends joked about asking their doctors for a Cytoxan prescription!

Maintenance

This consists of blood tests and urine tests. The main blood tests are sed rate, eosinophil level and ANCA. My rheumatologist also prescribed Bactrim – an antibiotic taken twice a week to help avoid nasal infections. I also see my ENT frequently to check my nasal passages and sinuses for any recurrence of polyps. I use Nasonex to help keep nasal passages clear, and I irrigate twice a day with a ph balanced saline solution. The basic message here is that nasal polyps are not a good sign! During my entire treatment I took Ambien every night to help me sleep and I still take it occasionally as needed. I still can’t do real exercise, but I can do my usual lunchtime walks exactly as before this whole thing began.

Flare-Ups

It’s not uncommon for some or all of the symptoms to re-appear, but usually in milder form and for short periods. These are called “flare-ups”. So far I’ve had two. Both have been “mild” and nowhere near as bad as the original condition. Neither flare-up included the rash or nasal polyps, but there was some upper respiratory problems. The first time my doctor simply put me on prednisone (Medrol) for a couple of weeks. The second time, with my sed rate ok but with my eosinophil and ANCA levels showing signs of creeping up, my doctor put me on prednisone and Methotrexate.

I’m still not back to normal, but I feel I’m well on the way. And I’m very lucky to have had wonderful doctors.

Published: February 2007

To read more stories, please visit the Vasculitis Stories landing page.