Churg Strauss Syndrome - My Story

2012-01-25T10:21:00.000-05:00

I spent 12 months fighting Churg Strauss Syndrome.

I'm telling my story in the hope it will help 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 Syndrome 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 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 Benedril for a day or so 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. It had developed during the day. 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 were many different forms, but the one that most closely matched my situation was a form called Churg Strauss.)

I explained my story to my Rheumatologist. I described the rash, and 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 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, 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 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 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 agressive case of the disease and wanted to take strong action by putting me on Cytoxan. 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 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 Cytoxin my blood tests showed a 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 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 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 Archilles 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.

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 interested in any diet that would 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 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 cerials rich in Flaxseed. I also discovered a special very dark chocolate that's 70% or more 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.

Recovery

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. 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 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 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 in addition to my usual lunchtime walks.

Flare-Ups

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

Doctors

I was very lucky to have superb doctors at MKMG. It's a large medical practice located about 30 miles north of New York City. Special 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 visit Ronen for follow ups and the treatment of my flare-ups. He's a great doctor. If you contact him about Churg Strauss be sure to mention my name.

Dr. Ronen Marmur
MKMG (Mount Kisco Medical Group)
90 South Bedford Rd.
Mount Kisco, NY 10549, USA
Tel# 914-241-1050

The Churg Strauss specialist in New York City:
Dr. Stephen Paget
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Tel# 212-606-1845

Also..
The Johns Hopkins Vasculitis Center in Baltimore treats Churg Strauss patients for all over the world. Call (410) 550–6825 for details.

Questions?
Email me abbottsystems@gmail.com
-Ken Abbott

Churg Strauss Syndrome - My Story

2010-11-16T21:59:00.010-05:00

I spent 12 months fighting Churg Strauss Syndrome.

I'm telling my story in the hope it will help 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 Syndrome 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 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 Benedril for a day or so 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. It had developed during the day. 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 belong 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 were many different forms, but the one that most closely matched my situation was a form called Churg Strauss.)

I explained my story to my Rheumatologist. I described the rash, and 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 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, 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 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 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 agressive case of the disease and wanted to take strong action by putting me on Cytoxan. 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 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 Cytoxin my blood tests showed a 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 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 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 Archilles 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.

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 interested in any diet that would 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 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 cerials rich in Flaxseed. I also discovered a special very dark chocolate that's 70% or more 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.

Recovery

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. 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 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 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 in addition to my usual lunchtime walks.

Flare-Ups

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

Doctors

I was very lucky to have superb doctors at MKMG. It's a large medical practice located about 30 miles north of New York City. Special 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 visit Ronen for follow ups and the treatment of my flare-ups. He's a great doctor. If you contact him about Churg Strauss be sure to mention my name.

Dr. Ronen Marmur
MKMG (Mount Kisco Medical Group)
90 South Bedford Rd.
Mount Kisco, NY 10549, USA
Tel# 914-241-1050

The Churg Strauss specialist in New York City:
Dr. Stephen Paget
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Tel# 212-606-1845

Also..
The Johns Hopkins Vasculitis Center in Baltimore treats Churg Strauss patients for all over the world. Call (410) 550–6825 for details.

Questions?
Email me abbottsystems@gmail.com
-Ken Abbott

Vasculitis Disease

2010-08-22T19:47:00.003-05:00

I spent 12 months fighting an autoimmune vasculitis disease called Churg Strauss Syndrome. Autoimmune means that the body's immune system attacks itself. Vasculitis is a diseases that involves inflammation of blood vessels. Different types of vasculitis attack different types of blood vessels.

I'm telling my story in the hope it will help 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 Syndrome 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 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 Benedril for a day or so 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. It had developed during the day. 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 belong 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 were many different forms, but the one that most closely matched my situation was a form called Churg Strauss.)

I explained my story to my Rheumatologist. I described the rash, and 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 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, 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 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 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 agressive case of the disease and wanted to take strong action by putting me on Cytoxan. 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 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 Cytoxin my blood tests showed a 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 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 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 Archilles 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.

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 interested in any diet that would 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 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 cerials rich in Flaxseed. I also discovered a special very dark chocolate that's 70% or more 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.

Recovery

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. 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 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 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 in addition to my usual lunchtime walks.

Flare-Ups

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

Doctors

I was very lucky to have superb doctors at MKMG. It's a large medical practice located about 30 miles north of New York City. Special 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 visit Ronen for follow ups and the treatment of my flare-ups. He's a great doctor. If you contact him about Churg Strauss be sure to mention my name.

Dr. Ronen Marmur
MKMG (Mount Kisco Medical Group)
Main Campus
90 South Bedford Road
Mount Kisco NY 10549
USA
Tel# 914-241-1050