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Churg Strauss Syndrome - My Story

Churg Strauss Syndrome - My Story

IMPORTANT UPDATE -- The United States Food and Drug Administration (FDA) has approved the first drug to treat Churg Strauss Syndrome. The drug is called Nucala (Mepolizumab). Here is the Press Release Nucala - Churg Strauss Drug Approved by FDA

I've fought Churg Strauss Syndrome for many years.

Churg Strauss Syndrome is an autoimmune vasculitis. Autoimmune means your immune system malfunctions and attacks your body. Vasculitis means that blood vessels are involved, and Churg Strauss causes inflammation of small to medium size blood vessels.

I'm telling my story in the hope it will help others. Of course, these are just my personal recollections, they are not intended 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 messy because the implant head fractured and my dentist had a tough time. Anyway, a few hours after I got home I developed a rash around my ankles. My dentist thought it was an allergic reaction to the antibiotic. I took Benedril for a few days and it went away.

A week later I painted a room in our house and that evening as I showered I noticed the rash had returned. I stopped by my medical practice and saw the doctor on duty. He immediately mentioned vasculitis. It was the first time I had heard the word, and he explained it was an autoimmune reaction that attacks blood vessels. The next day I saw a dermatologist who 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. It turns out that Rheumatologists are the doctors who specialize in autoimmune problems.

My Rheumatologist
I go to a large medical practice so all the specialists are in-house and it was easy to see a Rheumatologist. By now of course I had been Googling vasculitis like crazy. I discovered there are many different types, but the one that most closely matched my situation was a form called Churg Strauss.

I told my story to my Rheumatologist. I described the rash, and how it had occurred. 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 bronchial asthma for several years. He ran blood tests which showed a very high eosinophil level. By now I was also having numbness in my legs, arms and feet.

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, but he referred me to a Churg Strauss specialist in New York City. He said I must continue taking Prednisone, a standard first line treatment for inflammatory 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 serious muscle weakness in my legs and arms. I had difficulty breathing and walking, with numbness and discoloration of the feet. 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 wanted to take strong action by putting me on Cytoxan (Cyclophosphamide). This is a drug first used for cancer patients but later found to be effective for autoimmune conditions. He explained there were "milder" drugs that could be used but he felt we should treat my Churg Strauss aggressively from the beginning.

I took Cytoxan for about 3 months and continued to take the Prednisone which was now up to 60mg per day. After I finished the Cytoxin my blood tests showed a reduced eosinophil level, so progress was good. My feet and lower legs were still numb which made walking difficult and as a side effect of Cytoxin I lost a lot of my hair.

A few weeks after stopping the Cytoxin 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 a return of the ankle rash but my specialist explained that this was a reaction to the Imuran and told me to stop 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 Archilles 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.

While I was at home in a cast recovering from the tendon rupture I had a telephone consultation with a nutritionist. I asked if there was a diet to reduce inflammation. She said that such a diet exists and gave me the basic rules. Here's what she said (and what I did, and still do!)..

Don't eat anything 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. Flaxseed is great, sprinkle it on your morning cereal (tip - it's more effective if ground). I do this every day. Spices are good, especially Tumeric. I love Indian food, so this was great news. I also discovered a special dark chocolate that's 85% cocoa content. It's advertised as rich in antioxidants. I checked this one with my Churg Strauss specialist in New York City and he told me, "go for it." I did, and still do. The Chocolate is Lindt, Extra Dark, 85% Cocoa.

At about the same time I recovered from the tendon rupture I finally got myself off 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 Xrays to check lung conditions. 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.

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

This consists of blood tests and urine tests. The main blood tests are sed rate, eosinophil level and p-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 ph balanced saline solution (Sinus Rinse from NeilMed). The basic message here is that nasal polyps are not a good sign! I also take Advair daily to control my Asthma symptoms. During my entire treatment I took Ambien every night to help me sleep and I still take it occasionally as needed. I'm now back exercising as usual!

It's not uncommon for some or all of the Churg Strauss symptoms to reappear but usually in a milder form and for short periods. These are called "flare-ups". So far I've had four. They have been "mild" and nowhere near as bad as the original condition. The flare-ups have been treated with Prednisone (Medrol) and Methotrexate.

Thanks go to my Rheumatologist Dr. Ronen Marmur. He managed my entire case and found me the Churg Strauss specialist in New York City. I still see Ronan for my flare-ups.

Many thanks go to Dr. Stephen Paget my Churg Strauss specialist in New York City. He took aggressive action which I feel made a huge difference.

Content written and posted by Ken Abbott

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