Patient Stories- CSS Around the World

In Our Own Words, a forum for folks affected by CSS to share their experiences, is one of the most popular features of the CSSA website. We are very pleased that three patients, from all around the world, have shared their stories for this July, 2006 update.


Life Begins at 40, by Julia P

CSS: Always searching for answers, by Joan Miles

A Patient’s Perspective: Participating in the VCRC Patient Longitudinal Study

My Own Story- Reducing Prednisone, How I Did It by Larry Geyerman

CSS In Germany, by Peter Zelewski

 

 

 

 

 


 

 


Life Begins at 40
by Julia P
New Zealand
July, 2006

Life should have been going well. I was turning 40, my three young girls were growing up and we had taken the plunge and moved to a beautiful island in New Zealand. We had so much to look forward to. So why was I feeling so tired and lifeless all the time? Was my life really over at 40?

I went for counseling. I went to an osteopath. I tried an herbalist. My friends told me to take it easy because I was stressed. I was losing weight fast, but it seemed pretty good to be getting my body back after having kids.

We decided a holiday would improve everything, so went to Fiji. Once we reached our island paradise I realised I couldn’t breathe. It felt like asthma, which I hadn’t had for years. I was able to speak with a Doctor over the phone and some prednisone was shipped out to me the next day – wow, I felt great! By the end of the holiday I had tapered off and my friend took one look at me and said ‘you’re sick again’. She was so right.

A few more Doctor’s appointments; a few more doses of prednisone. I could get a pretty high peak flow reading but still couldn’t breathe. My arms and back started aching and I wondered how we could possibly have bought a new bed which was so uncomfortable!

Then the night sweats and fevers kicked in. I couldn’t get through the days without a sleep. I couldn’t eat. My husband was enticing me with beautiful meals of freshly caught snapper, and I had no interest. All I could swallow was yoghurt. None of the GPs I was seeing could work out what was wrong, and I felt like such a fraud saying I ached and I was tired – isn’t that normal for the busy mother of three children? I decided to try one last local Doctor. Dr Barnett Bond was a retired surgeon and practising as a part time GP when he wasn’t growing grapes to make his divine Miro wine. His approach saved my life – finally someone believed what I was saying and he methodically set about finding a diagnosis.

Thankfully it only took a week and a half. The bloodwork showed eosinophils of 4.57, then a lung xray showed infiltrates. I had found Churg Strauss on the internet but it was too scary to read too much in case it was something I really did have. One beautiful morning, I was walking on the beach with my baby. It was impossibly difficult to push the pram up the sandhills. I went home for a sleep, and was woken by a phone call. The Doctor was saying I had to go to the hospital. Not next week or next month, but, “Next ferry. They’re expecting you.” I was told to pack a bag; I might be a few days. I was hysterical thinking about leaving my kids and terrified about what might be wrong.

Once I got to hospital I was put under observation. I was given pain killers for my aching arms, and a nebuliser for my breathing. Doctors started talking about lung biopsies. All of a sudden everything changed - I had a bad reaction to the drugs, an abnormal ECG, my troponin levels had risen to 1.57 showing signs of heart damage. I was having a long slow heart attack. In a period of six months I had gone from having the perfect life to being the youngest person by years lying in the Coronary Care unit of Auckland hospital. How could this be happening to me?

When you look back at my history I was a prime candidate. At age 4 I had my tonsils and adenoids removed. As a teenager I developed asthma. In my early 30’s, I was living in Sydney, and working in the food industry. All of a sudden my sense of smell (and taste) disappeared. Apart from making my work difficult, I certainly couldn’t enjoy red wine in quite the same way that I had previously. An operation removed polyps but I could never really smell anything after that.

As new and improved asthma medications and sinus sprays were released onto the market I was prescribed them. I had enjoyed the longest period of stability taking Symbicort.

Once I was in hospital, a Churg Strauss Syndrome diagnosis was made on clinical grounds. An echocardiogram showed pericardial effusion and LV impairment. I responded immediately to high doses of corticosteroids and twelve days later I left the hospital feeling better than I had in a long time, positive about having a diagnosis, but uncertain about how I was going to get through the next weeks and months.

I was in a state of prednisone induced vagueness. I got through that time with a lot of help from family and friends. We cancelled our Christmas travel plans and stayed at home. With both a healthy appetite and a sense of smell which I hadn’t had for years I ate everything that appeared in front of me!

What they don’t tell you about chronic illness is that you will be half well all the time, they don’t say what it means to your relationship with your family and friends when you don’t have the energy, and they don’t tell you the drugs will make your body look and behave in ways completely different to what you’d ever imagined. On one hand I’m so happy to be alive; on the other I don’t know where to put this illness – whether to wear it on my sleeve or whether to ignore it and pretend to get on with my life. I am grieving the life I had anticipated and the body I once owned. I worry about my children. What genetic inheritance will they have? Already, my eldest daughter is highly allergic to nuts and has chronic adenoids.

I am still learning about Churg Strauss, about medications and treatments. How wonderful it is that we live in an age where the internet can give us access to so much information and support.

This is my story 8 months after being diagnosed. What will my story be like in 10 years? 20 years? Beyond? Well, they say that life begins at 40 and so this is really only the beginning.



 




CSS: Always searching for answers


Joan Miles
Pennsylvania

July, 2006You know when you feel like everything is right with the world, everything is going the way it should, everyone is happy, etc? I think if/when you hit that point in your life, you’re bound for some troubling news. We’re put in these situations to really make us stop, and really think about how things REALLY are.

I’m going to make this as short as possible, because, like most of you, I’ve been dealing with health problems for quite some time. Hopefully someone, somewhere, will read this and have something in common with me. Just know that you are not alone, there is hope and hopefully this too shall pass.

I’m 37 years old and have been dealing with health problems since 1999. I am the mother of 2 very healthy and energetic boys. Connor is 7 and Zachary is 4. Connor is my marker. Everything started a couple of months after he was born. My symptoms started with heartburn. After endoscopies, 24 hour pH study, manometry testing and a laporoscopic nissen fundoplicaion, that problem was resolved.

Around the same time this was happening, I had 3 trips to the ER with breathing problems (after having taken Advil, Motrin, any aspirin product). You all know the drill of prednisone tapers, etc..it just took 3 visits to get one of the doctors to tell me that it’s common for someone with asthma to be allergic to aspirin products. Diagnosis: Aspirin sensitive asthma (2/00)

Following my lap nissen surgery in 4/00, I noticed that my ability to smell and taste had vanished, but just wrote it off as a bad cold. When it hadn’t returned for several months, I started to get a little worried. So, I found an ENT. He told me that I had polyps all over the place and with my history, have Samters Triad (asthma, aspirin allergy, nasal polyps). I had my first polyp surgery at this point in 3/01. Diagnosis: Samters Triad.

In June 2001, when all of the “I don’t knows” started coming at us. I got very ill with GI problems, lost a great deal of weight, was hospitalized with a high heart rate. Ultra sounds, stress tests, EKGs, the whole nine yards were performed, but everything came back negative. Even had another endoscopy to make sure that the lap nissen didn’t come undone, which it hadn’t. Had blood tests run every day for the week I was inpatient, but nothing was discussed in this regard, so we thought nothing of it. We would learn 3 years later that I had a slight increase in eosinophilia, and elevated amalyse and lipase. This would later come into play. I was released from the hospital on a prednisone taper.

Diagnosis: Allergic reaction to medication.

I became pregnant with Zachary in September 2001. Sinuses were absolutely horrible, going through about 3 boxes of tissues a week. Other than that, my health was great and Zachary came into the world quite quickly and healthy as ever.

My sinuses never improved from that point as my nasal polyps continued to grow so I went through my 2nd polypectomy in January 2003. Looking back on everything now, it seems that I had a remission, though without diagnosis of anything, and it was all without being on any medication. 2003 was the last I remember being drug free and symptom free. 2004 was definitely the year that I would love to forget, but it was also the year when I went through so many doctors scratching their heads wondering what was going on with me, that they finally took some time to research and notice that something rare could be happening.

Having gone through an awful digestive problem in 2001 part of what started happening to me in June 2004 felt like a déjà vu. I was unable to eat, had horrible pain in my right side, felt extremely nauseas and just knew something was going on, just didn’t know what. I took a trip to the ER (we were out of town), they did tests to check for appendicitis, turned out negative, sent me home with pain medication. Long story short, I didn’t get better, in fact I got much worse. I felt like I was in labor, so I thought it might be GYN related, so saw that doctor. Negative. More tests, more pain killers but no answers. Diagnosis: Unknown.

I got to the point where weight was dropping and pain was so intense that my doctor sent me to the ER. Here they did some blood work that showed I had pancreatitis and elevated LFTs (liver function test). Admitted me and I remained for 2 weeks, only to return off and on for the next 2 months. While there, I went through too many tests to mention looking for answers that caused my pancreatitis. They removed my gall bladder, gave me TPN (artificial nutrients), tried everything. Until, one blood test showed my eosinophil count was elevated to 64%. FINALLY, my doctor decides to do a prednisone taper and I get better within hours. Diagnosis: eosinophilic gastroenteritis? Idiopathic pancreatitis? Primary sclerosing colongitis? Pancreatic divisum?

I went through my 3rd polypectomy in November 2004. If anyone has been through this, you know that prednisone is taken before and after surgery. So, for about 3 months I was symptom free. Once I was off of the steroids, my pancreatitis came back as well as high eosinophils and elevated LFT’s. What in the world is going on? I had 2 ERCPs performed and got pancreatitis both times. The second one was successful and they had to put stents in my bile ducts to open them. It was interesting that I started getting a rash at this point (April 2005). At first they biopsied the rash and it came back as an allergic reaction. Next time it comes back and it shows vasculitis. Taking me to my CSS diagnosis in November 2005. YIPPEE!

This is quite a Cliff’s Notes version. I definitely have some sort of GI involvement with my CSS. I would hope that someone that reads this has the same, or similar experience. I think that the hardest part of this disease has been the time of uncertainty and the unknown. That look on the doctor’s faces when you show up and say, “Hi, my name is Joan Miles and I have Churg-Strauss Syndrome.” And they look at you like you are speaking some foreign language to them. We can really educate them and be advocates for this. Sometimes, we know a lot more than they do.

I know for a while I was so concerned about getting a diagnosis. I wanted a name for what I was going through. My doctors would tell me a possibility of what I could have, I would come home and look it up on the internet and immediately get scared out of my mind. I kept thinking, this is it. I’m going to die and no one is going to figure out why. I definitely had my low points. But, now I’m well managed with medication and will hit my one year mark of being in ‘medical remission’ on September 2, 2006.

I feel very blessed. I feel very fortunate for all of the people I’ve met along this journey, the doctors I have met and educated, and other CSS patients. I’m currently on 5mg prednisone and 2g Cellcept and symptom free! There is hope, there is happiness and I know some day there will be a cure. But for now, it’s great to be enjoying life and knowing that I’m never alone.

 





A Patient’s Perspective: Participating in the VCRC Patient Longitudinal Study
Jane Dion
July, 2006

As a long time patient of Dr. Peter Merkel, who is the principal investigator of the VCRC, and as one of the founders of the Churg Strauss Syndrome Association, I was given an opportunity to become one of the first participants in the VCRC CSS Longitudinal study. This is my experience.

I registered for the VCRC contact registry in February, 2006. I had procrastinated about registering because I thought it would be a long, involved process. In actuality it took all of two minutes to answer the questions found on the contact registry. I was surprised at how easy it was! Now patients may also register by snail mail or by calling a toll free number.

I was contacted by letter in April, 2006 and was told that I had an opportunity to participate in the longitudinal study. When I agreed to participate, I was sent pages of detailed information about every aspect of the study as well as permission forms. The informational packet made for interesting reading and was presented in non technical terms that made it easy to understand.

The first visit took place at the BU General Clinical Research Center. Since BU Medical Center is a massive facility, I was glad to be met by Ashley Leavitt (left), Clinical Research Coordinator, who led me to the Research Center.

I met with Dr. Merkel on this first visit. He took a detailed medical history and examined me thoroughly. He worked with me to complete several questionnaires. He also gave me details about my role in the study and encouraged questions. I then gave blood and urine for testing. The first visit took about two hours but as I was fascinated by the whole experience the time passed quickly

The second visit took 10 minutes as it was only a lab visit.

Dr. Merkel or an associate will see me every third visit for a full clinical work up including a physical examination, a history, and labs. During the first year I will return to BU Medical Center on a monthly basis for lab work as well. After that, I will return every three months. If my disease flares, I will be seen more often.

The Research Center at BU Medical Center is a comfortable and friendly place. The nurses are experienced, gentle and considerate. Once, when it was lunchtime, I was offered a complementary meal.

After each visit I was sent a check for $25 to help pay for gas and parking.

Although my disease is mostly well controlled with medication, I often hear from people who are struggling because their CSS was diagnosed late, or is resistant to standard treatment. As one of the “luckier” patients with CSS, I feel an obligation to do what I can to advance an understanding of this disease. In addition, I realize that advances in understanding one of the vasculitic diseases may bring greater knowledge of others.

Being in the VCRC longitudinal study feels empowering for me and makes me feel that I am actively doing something that might eventually help others with vasculitis.

 

 

 


 

 

Larry Geyerman, California
October 2006

I was diagnosed with Churg Strauss Syndrome (CSS) on August 20, 1999 just before my 50th birthday. I had been in the hospital for 20 days that began with a sinus drainage operation. I had been in a daze for nearly 3 months prior with off and on cough, headaches, fevers, chills, sweats and lack of concentration. I did not and do not have asthma. What happened was the kick-off of a six year battle with prednisone where I began a relationship instead of a fight.

My doctors diagnosed CSS with a biopsy of vasculitis as I met only 4 of the 6 criteria. My badge was wheals all over my skin and sinuses that continued to become impacted.

I was started on 3 days of 1000 mg of solumedrol in the hospital and then given a prescription of 80 mg a day of prednisone. My symptoms were being relieved and I was finally on my way home.

Prednisone gave me my life back. It did make me paranoid at first, as it was so bright outside, and field trips to restaurants were really disturbing to me. I didn't need to sleep, I had the energy of a 10 year old and I could be angry in less than 2 seconds which was unusual for me. But I could think again and knew to apologize within a few more seconds.

After a month, the doctor reduced my prednisone to 60 mg and I still did not require sleep. I could watch movies, clean the house, wash the car, mow the lawn, pull weeds, go to work, and watch sports endlessly to try to put me to sleep. I thought the Australian Rules Football games would bore me to sleep as they played in the middle of the night on TV, but I was wrong and learned the rules and cheered the players as the Boston Demons won. My doctor said that I was sleeping and didn’t know it, but I gave him the football plays and scores, the movie plots and the latest gadget reviews that played through the night. During the day, I always went to work.

The following months, my prednisone was reduced by 10 mg each month until I got to 20 mg, then it was to 15 mg/day. I read the effects of prednisone and thought that I had better reduce it. My doctors never told me how to do it, as I don’t think they really knew how it would work for ME.

I worked myself down to 2.5 mg quickly. My Rheumatologist declared me in remission. It was only a week before I had a flare, characterized by dry cough, body aches, then chills and finally, fever. I had been told that I should never, ever ramp up my dose of prednisone, and so I took 15 mg for 3 days, 10 for 3 day and 5 for 3 days. And I flared again. So I tried again.

On the 3rd flare, I started to consider that I needed Cytoxan or Methotrexate. But my Rheumatologist said she would not consider those drugs as prednisone worked, so she suggested that we treat the next flare with 30-20-15-10 over a 12 day period. And then, I would take 1 mg above my last stable prednisone dose. It didn’t work. I could not maintain health below 15 mg.

I stayed at 15 a day for several months. I had come to terms with prednisone. It had made my life manageable. My symptoms were still there, wheezing, due to injured lungs and bronchial tubes, and ongoing sinusitis.

I had a second operation on my sinuses to improve drainage. After a while, I was feeling particularly well and was able to reduce my dose to 15 mg every other day over a short period of time, although I do not recommend this for anyone. I was surprised that it worked! During the next 2 years, I stayed at 15 mg every other day.

My ENT (Ears, Nose & Throat) doctor had recommended that I begin to rinse my sinuses with a Grossan attachment to a Water Pik. My last CT scan showed that my frontal sinuses were fully impacted and he wanted to obliterate them with surgery, peeling my face down, removing the sinuses and filling them with fat or bone. I sought a second opinion. The second ENT also recommended the procedure. After research, I felt the operation was too radical and I sought a 3rd opinion from the Head of the ENT Department at UCLA Hospital. He said, “It depends on your quality of life. If you can live with the headaches, and as long as it is not threatening your brain with pressure, just wait.” So, I did not go through the surgery.

Using the Grossan, I rinsed my sinuses daily. Slowly, the headaches went away and I eventually went back to my ENT. He had a CT scan done and my sinuses were clearer than he had ever seen them. But I still had wheezing and my prednisone was at 15 mg every other day. My Rheumatologist added low doses of Bactrim to my meds. I felt then that I was starting to make progress.

I had read that reducing prednisone was very difficult if you have an auto-immune disease. I ran across one article that really showed that someone had taken reduction to the nth degree. The process was taken down to hourly small doses of prednisone that I did not have the will to follow.

But I had read many accounts that REDUCTION of prednisone and related steroids MUST BE DONE IN VERY SMALL INCREMENTS OF NO MORE THAN 10% AT A TIME AND IN NO CASE SHOULD PREDNISONE BE REDUCED IN LESS THAN 2 WEEKS TIME. It appeared to be written in stone.

I set a program that I would be off prednisone by November 2005. All this time, I was taking Prevacid, Fosamax, Bactrim, Vitamin D + Calcium and rinsing my sinuses daily. I would only reduce the prednisone when I was feeling absolutely well.

Every time that I reduced the prednisone, I felt I was run over by a truck the next day. It would pass, usually the next day. I was unable to reduce the prednisone dose at the speed which I wanted as I had flares and had to go back to 1 mg above my last stable dose when I finished my rescue dose regimen. When I was on less than 5 mg a day (10 mg on alternate days), the moon face went down and the buffalo hump disappeared. Over the past 4 years, I had gained 30 pounds (13.5 kilos or 2 stones for those of you across the pond).

As I said in the beginning, I had a relationship with prednisone. I hated it, but I loved it. I could do great things when I took it. And I know some of you have side effects from it. I didn’t; or at least, no visible side effects. I tolerate steroids well.

Here is the program I used to reduce my prednisone usage with the rules of decrease:

1. Below 15 milligrams of prednisone daily, I never reduced more than 10% of the last dose.

2. I never reduced prednisone just because that was the day that I was supposed to decrease it, > UNLESS I felt perfectly well. (Little cough,headache, wheezing.)

3. When I alternated daily doses, I found the side effects (moon face, buffalo hump, and facial > skin redness) dropped more dramatically.

4. On alternate day doses below 4 mg, I had to switch back to daily doses as I felt less healthy on the days off. (My body seemed to know the difference between the days on and off).

5. Below 4 mg/day, it was impractical to reduce less than ½ mg and stretched the time period to 1 month. (Note: My doctors scoffed at the idea that I needed to reduce prednisone by ½ mg. and at 3 mg every other day asked, “Why don’t you just quit?”) I really don't think they understand how much you must fool your body into thinking that everything is ok.

I didn’t quit at 3 mg as why should I risk it after 3 years of a program that worked for me? Too many of us have had to deal with the ups and downs of doses. The bottom line is that I was able to reduce the prednisone to nothing through a long and determined
process. I didn’t want to yoyo one more time with it. How could anyone argue with the success I was having?

I also had a walking and swimming program depending on the season during this whole time. I tried to walk between 2 and 5 miles a day, or swim ¾ to 1 mile a day, or I would do sit ups and push ups (those I eventually had to quit due to bursitis in my shoulder). But the weight still piled on. When the prednisone dose was down to 1 mg, I went on a strict diet. My daughter had rubbed my stomach and asked, “Is it a boy or a girl?” What a good motivator that turned out to be! I lost 22 pounds (10 kilos or 1.5 stones) now. The next 10 pounds to lose has proved to be elusive, but I am just above the weight I was at in my 20’s.

I have been off prednisone and all the associated drugs I had to take since January 2006, but I am not afraid of taking it again either. Prednisone made me well and a productive member of society (or so I hope). I no longer constantly wheeze, I have a productive cough from time to time, and my sinuses are still clear (I attribute sinus health to rinsing).

Prednisone did not eat my bones; the dexa-scans were ok. My eye doctor said I had no signs of cataracts. Of any of the number of severe side effects that can happen, I have not had to deal with any, but I would have taken prednisone anyway. Would I take prednisone again? In a minute! You see, we have a relationship, prednisone gets me well, and I promised to take it until I'm well.

Finally, as we all know CSS will not go away, we have it forever. It is manageable though, and so it's all about quality of life. The most important is to keep after your doctors and to find the right treatment that will work for you, as we are all different.

For me, that was prednisone for 6 years, and so my flares, when treated promptly, would clear within 24 - 48 hours. I changed my lifestyle since diagnosis and became healthier. My attitude was always positive, when I would feel terrible, I knew there would be a better day. If not tomorrow, then the next day will be better.

Don't complain to friends and family, as they can't really understand. Complain to us, here on the CSSISG list, as we DO know how you feel, and, above all, stay positive. Worrying takes energy, and you'd better use that for getting well again. Follow this and I will see you on the remission side soon too.

Larry Geyerman, San Diego
CSS 8/99





 




CSS In Germany, by Peter Zelewski

Peter Zelewski is a Churg Strauss patient in Germany. He is a founding member of the Vasculitis-Support-Group at Bad Bramstedt Clinic. The aim of this group is to give concerned ones as much information and support as possible. Peter is currently the speaker of the German Vasclitis Patient's Support Group http://www.vaskulitis.org/


This is Peter’s story as written for the Vasculitis Foundation newsletter:

In January 1945 my mother fled with her five children and my grandmother from our home located in a small seaside resort near Koenigsberg in Eastern Prussia. We found a new home in the north of Germany, in a land between the seas called Schleswig-Holstein. Maybe this closeness to water made me become a sailor.

Vasculitits, manifesting as Churg-Strauss- Syndrome, influenced my life to a great extent. By the time the first symptoms showed I was married with two sons. My family always stood by me, was my very own support group. People like me then depended on their families and maybe some good friends to cope with all the problems that this disease brought on us as support groups were widely unknown in the eighties.

In 1994, with the help of some clinical staff, some vasculitis patients founded a support group in the Rheuma Klinik in Bad Bramstedt. Our aim has always been to help patients and their families make this disease better known and to form local support groups.

The following story tries to describes the long and hard way from my falling ill to diagnosis and therapy.

Since 1974 I had been suffering from symptoms prior unknown to me, mainly sinusitis connected with fits of coughing which even led to the fracture of two ribs and the rupture of my diaphragm. In 1975 the first signs of asthma showed. I consulted doctor after doctor, and many pulmologists from all over northern Germany. I dragged myself from doctor to doctor year after year. In the meantime, the asthma attacks grew worse and quite often the asthma-aerosol could not suppress the symptoms anymore, so that I had to rush to the refrigerator where I kept medication ready made and an inhaler waiting for me, which my doctor had prescribed for emergencies.

I had been a sailor but at that time was not working as one anymore, due to the smaller and smaller numbers of sailors needed. Nevertheless my job required me to travel abroad for up to three months at a time now and again. I was working for a firm which set up shipping companies in third world countries. When I returned home from a three months stay in Cameroon in 1988 I suffered a total collapse. I had high fevers, pneumonia with severe fits of coughing, swollen joints, blue patches on the skin, mainly at the smaller joints, attacks of asthma and inflamed nerves in my legs and feet. I was hospitalised in Itzehoe and put into isolation since I had come from a tropical country. After three days I was admitted to the Bernhard-Nocht-Institut in Hamburg, a hospital specialised in tropical diseases. After eliminating the possibilities of parasites or similarly disgusting things in my blood and body, a high concentration of eosinophils in my blood was noticed (more than 45%). The Bernhard-Nocht-Institut is known for its quick and precise diagnosis. On the ninth day of my stay I was visited by Prof. Dr. Dietrich who was at that time head of the hospital. He said: "Mr. Zelewski, we know now what you are suffering from, it is the Churg-Strauss-Syndrome." I had no idea what that was. Prof. Dietrich told me that a young doctor, who as a student had attended lectures by Prof. Gross, now head of Bad Bramstedt hospital's Vasculitis Center, had remembered the connection between high EOS, asthma and CSS. In the meantime a biopsy of my lung and of my dark patches of the skin had been carried out and the vasculitis had been confirmed by histological results.

I was ordered to rest a lot. I received high doses of cortisone and asthma medication. I started on 90 mg Prednisolone. A quick improvement of the symptoms followed. I was not able to live through the night without cortisone, though. When I was dismissed from the hospital after four weeks I was on 15 mg in the morning and 5 mg at night. Taking cortisone and my asthma-medication have enabled me to live quite well over the years. I was no longer able, of course, to practise my job with long stays abroad, quite a few of them in tropical areas. So I started working for a Chinese shipping company in Hamburg, working ashore on an office job.

By 1994 my condition had worsened. My heart became affected. I was treated in the Vasculitits-Centre of Bad Bramsted hospital. I had to learn how to handle a wheelchair, and daily received 100 mg - 200 mg of Cyclophosphamide ( Endoxan). Nevertheless I suffered from frequent, almost constant pain in the heart. The treatment with immunoglobuline showed surprisingly good results at first. However, this medication is incredibly expensive and after two or three months my condition was the same as before the treatment.

Now I was able to profit from the benefits of the hospital's vasculitis centre. They cooperate internationally with institutes, where as well research is being done. The Mayo Clinic in Rochester, USA, had obtained good results in treating patients with CSS and hypereosinophilia with Intron-A, an alpha-interferone. Four patients with CSS at Bad Bramstedt hospital were offered treatment with this new medication. All four of us agreed. The trial treatment with 3 million units of Intron-A started in May 1995. I am on this meededication to this very day. The pains in my heart still occur occasionally but now I am in a stable partial remission. I take 5 mg Decortin-H daily plus my asthma and heart medication.

I still haven't given up hope that one day I will be able to live without some of the medication. During my stays in the Bad Bramstedt hospital I met quite a few patients who live on a very low dose of cortisone, or even without any medication at all.

As you can see I am an optimist, and I feel well.

Peter Zelewski
July 2006

 


Local contacts for CSS patients
Holland Greece France Belgique Italy Ireland Swiss Germany UK Spain
Norway Sweden Denmark Australia New-Zealand Japan Canada USA Czech-republic Brazil


About the CSSA | About Churg Strauss Syndrome | Research Articles | Helpful Links | VCRC Patient Registry
News Archives |
Patient Story Archives | Focus on Research Archives | Membership and Donations | Contact Us

Questions? support@CSSAssociation.org - Phone: 413-862-3636
CSS Association, PO Box 671 Southampton, Ma 01073-0671
© 2003 - 2006 CSS Association, All Rights Reserved.