“You have Churg Strauss Vasculitis” the Consultant informed me.” “Can you write it down, please”
Churg Strauss meant nothing – but Vasculitis – the daughter of a friend suffered from that and she has had two kidney transplants, not good news then.
“You’ll be in hospital for four weeks. “ FOUR WEEKS – but I had so much to do with my work etc. However I had been under the weather for sometime so if I was to be fixed in four weeks then I could live with that.
The previous week I had severe back pains, a new ill-health acquisition for someone who had many years of suffering from asthma and nasal polyps. My GP informed me that I had a trapped nerve in my spine and I accepted that until on Saturday night the pain which had moved to my legs became so severe that i sent for the out of hours doctor who gave me strong painkillers and advised me to see my GP on Monday. The painkillers worked – I slept soundly and awoke to find my legs didn’t work, they were rubber. I thought I had CJD as I walked like the ailing cows i had seen on TV.
Off to the A&E in the City Hospital (it existed then 2004) and after a very long day, cursory attention from the triage nurse, many repetitions of my symptoms to a trainee/very young doctor, I eventually saw a competent doctor who admitted me and even found me a bed, all be it in a geriatric ward – I was fifty-one at the time.
I was wired to a heart monitor and during the night it went into explosive activity and various health professionals gathered around it, watching it, talking together.
I silently begged for someone to notice me, talk to me. Eventually one of the nurses asked me “Have you had a stroke before?” Was this encouragement to have one?
Next day the competent doctor and a consultant from neurology examined me and debated whether I should be admitted to neurology or a heart ward, given my heart’s misdemeanour the previous night. Neurology won and I was put into an ambulance – what a tin can – and transferred to the Royal Victoria Hospital and to the horrors of a mixed ward. The man in the next bed, yes the next bed, was very ill, dementing, violent, turfing anything he could reach at the nurses and his language was choice. My brother, who phoned me on one of those outrageously expensive, by your bed hospital phones, asked me if I were in a pub.
My four week sentence started. With a few exceptions, I had excellent care. Every bit of me went under examination. My consultant insisting that my treatment would be so severe that he wanted to be confident of his diagnosis as Churg Strauss is rare.
My condition got worse, having lost the use of my legs, I lost the power in my arms and hands. The horror and humiliation. I had to be fed by hospital staff and I’ll spare you the other details. My optic nerve was also affected. I was on a high dosage of Prednisolone and a cocktail of other drugs at this stage and eventually responded. Then i had to learn to walk again, initially with physios and then acquired my own zimmer/rolater. Independent at last – I could go to the loo by myself even if one of my friends asked “Does that not make you feel vey old?” and another thought it belonged to my father.
After four weeks the discharge home was welcome but new challenges awaited, especially stairs. I needed help up at night and down again in the morning. I took to wearing a rucksack so that I could carry what I needed and there was disproportionate disappointment if i forgot something.
At this stage I should pay tribute to family and friends who were and remain hugely supportive.
However my employer was less sensitive to my needs. I was two weeks in hospital when my immediate line manager came to visit and advised me to take a package. I was horrified – 51 years old with a large mortgage and he scared me as I wondered what he knew about my condition that I did not know. When I returned home, he visited me again and reissued his invite to take a package, assuring me of good but unspecified package conditions. With the help of a friend I wrote to him asking for specifics and for the implications for my job. I have yet to receive a reply to that letter but when I was ready to return to work I negotiated the ability to work from home which made life easier.
While the hospital care was excellent, the follow-up care is poor but probably understandable given the limited resources of the National health Service. I started falling a lot as my balance was poor. I broke my elbow and three metatarsus. I got referred to hydrotherapy and found it most effective in getting my balance back and developing some strength. It is a valuable and limited resource so on being discharged from it I found an aqua aerobic class which I attend, supported by a float. A by-product of the treatment is a huge weight gain – five stones in all. Through a reduction in the Prednisolone, dieting and aqua I have lost one and a half stones but remain overweight and indeed unrecognisable to people I have not seen in some time.
My current situation is that I can walk short distances with the help of ankle supports and a stick. Some power has returned to my hands and arms, but is limited if I want to do anything with fine movements or lift anything which does not have a handle.
It took me a long time to “accept” the idea of disability, having previously been very active. I woke every morning in the first year hoping it had gone away. No one from Health care has ever spoken to me of being disabled, what my options are and what support is there so I am delighted to learn of the Vasculitis support group.
At the bottom of a leaflet for “Singular”, a drug used for asthma is the following: “Very rare cases of a condition known as Churg-Strauss syndrome have been reported during montelukast treatment in asthmatic patients……”
I used Singular for a brief time and neither my consultant nor my doctor thought it was a factor in my case. However I still yellow-carded it and would be interested in other people’s experience.
My name is Sean Mc Dermott.I have CS since 2011.
If anyone is interested contact me
Hi Sean, thanks for sharing your email address with us and hopefully others will reach out. We have a small group of people who have CS within VIA and can add your contact details to their group email if you are agreeable.
I was diagnosed with CSS in 2016 after a long period of exhaustive tests.Luckily up to now I’ve had no major organ infiltration but on steroid and other drugs. Have had limited response from Rituximab but hope to get on Mepolizumab soon instead?
Hi John, Have you had favourable results from Mepolizumab?
Just read that you were on rituximab.I was on it as well.but did not improve my condition.
How long are you on MEPOLIZUMAB [nucala].Ibelieve it takes a few months to kick in.
Please let us know how you are getting on.It is not covered by the hse in the south.
But there is some pressure to release it.
Yours S Mc Dermott
Having read other people’s symptoms I seem to have got off lightly up to now. My eosinophil blood count is near zero and still on Rituximab every 4.months.decreased my steroid intake to 10 mg a day to alleviate my mental reactions to such longterm use of prednisoline but this in turn exaserbates the chronic nasal issue with the return of severe nasal congestion etc and of course my sense of smell and taste have gone several years ago. The option of Nucala is there if I want to try it and I will discuss it more fully at my next consultation in May. But I don’t want to go from the frying pan to the fire. Maybe this is as good as it gets and my present condition is the new normal? Severe fatigue is my main problem and I can only work part-time for the past several years.
I am delighted to join the club,to share and learn.
Had a bad year in 2011 with chest and sinus infections.nerve damage down legs.
stiff fingers.very weak.I had gone from a strong 57yo farmer to an infected wreck.
In march 2011 put me on infusions of steroids an antibiotics.tests with xrays.ct scans.pathology.
cardiac.pulmonary.mri;s.neuros etc.I was examined by 7 consultants .diagnosis Systemic vasculitis
with eosinophallic pneumonia@ sinusitis.bilateral peroneal neuritis.[footdrop].Meds steroids@methotrexate.
In april i had sinus and broncho operations,steroid infusions.In may discectomy to clear nerves on my back,
In november i had a full lumbar fusion.At the moment the disease is controlled.[will explain later]
Yours.sean mc dermott.[galway]