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 Patients 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 couldnt
breathe. It felt like asthma, which I hadnt 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 youre
sick again. She was so right.
A few more Doctors appointments; a few more doses
of prednisone. I could get a pretty high peak flow reading
but still couldnt 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 couldnt
get through the days without a sleep. I couldnt 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 isnt 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 wasnt 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. Theyre
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 30s, 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 couldnt 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
hadnt had for years I ate everything that appeared in
front of me!
What they dont tell you about chronic illness is that
you will be half well all the time, they dont say what
it means to your relationship with your family and friends
when you dont have the energy, and they dont tell
you the drugs will make your body look and behave in ways
completely different to what youd ever imagined. On
one hand Im so happy to be alive; on the other I dont
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, youre bound for some troubling news. Were
put in these situations to really make us stop, and really
think about how things REALLY are.
Im going to make this as short as possible, because,
like most of you, Ive 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.
Im 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 its 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 hadnt 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 dont 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 didnt
come undone, which it hadnt. 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 didnt 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 didnt 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 LFTs. 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 Cliffs 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 doctors
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. Im going
to die and no one is going to figure out why. I definitely
had my low points. But, now Im 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 Ive met along this journey, the doctors I have
met and educated, and other CSS patients. Im 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, its great to be enjoying life
and knowing that Im never alone.
A Patients 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
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