My Experiences With Churg Strauss Syndrome- by Maureen K

Hello everyone,

I have been 'lurking' since finding out about this group from a fellow CSS person in another yahoo group for several types of vasculitis (savvy) & decided that it was time to introduce myself.

My CSS is related to my past history of allergy-related health problems that started to develop a year after I began to work part-time at a university library in1989 (after leaving the nursing profession).However, I was told by one doctor that my HLA tissue type of B27 (which was discovered when I participated in a study of people with non -rheumatoid, reactive arthritis in 1971) predisposes me to developing autoimmune diseases.

In 1990, I was diagnosed as having chronic bronchitis & asthma because of strong allergies to dust & mold & was started on Ventolin, to be taken as necessary for the coughing. My dad & his dad had these conditions, with adult onset. Shortly after being hired as full-time term day staff in the fall of 1993, I had to start taking a cortisone inhaler on a regular basis, as well as an antihistamine & the Ventolin.

I continued to work term for 3 years, despite worsening symptoms, including loss of smell & related taste due to chronic sinus inflammation.

After I started at my last job in the library in 1996, I began to be exposed to older books on a regular basis. This led to increased chronic bronchitis, sinusitis & asthma & dosages of my medications, as well as blepharitis (a chronic inflammatory condition of my eyelids), with the dust, dryness & increased computer use. A large number of allergy - related nasal polyps were removed in May, 1995.

I was diagnosed in 1998 with impaired hearing in both ears (worse in the left) and fitted with a left hearing aid to mask tinnitus. Later that year, I developed fluid in the right ear, which was treated unsuccessfully with an ear tube. In the summer of 1999, my hearing decreased more because of right ear fluid after a camping trip; this was also treated unsuccessfully with an ear tube. In 2000, I developed fluid in my left ear as well because of sinus inflammation, which increased my hearing loss from mild to moderate.

In March, 2001 I was started on Advair, instead of the cortisone puffer Pulmicort that I had been taking, because of increased problems with asthma & bronchitis. Sinus inflammation symptoms & hearing loss worsened during the months of March & April; tubes were inserted in both ears & some thick fluid removed by an ENT specialist on the 11th of May. I was also irrigating my sinuses with salt water twice a day & using a cortisone nose spray.

I developed numbness & tingling on the outer side of my left lower leg on May 8th; this gradually became painful & symptoms spread to the right lower leg and both feet over May & June (peripheral neuropathy), to the point that I was unable to work after June 21st because of the pain when walking. A CT scan & lumbar back xray done on June 8th showed some spinal stenosis & degenerative disc disease in the lower back, but the back specialist seen in Saint John, NB on July 18 felt that the pain from the peripheral neuropathy (PN) was too severe to be due only to lower back problems, so he suggested a neurology consult. Occasional episodes of numbness/tingling/pain in my shoulders, arms & hands became more frequent during the month of July, with range of motion of my upper body becoming more limited. Also, painful nodules appeared on my thumbs & fingers. I lost 10 - 15 lbs in about 3 months before diagnosis, due to lack of appetite.

A neurology exam on July 30th showed sufficient damage to the nerves & muscles of my arms, legs, feet & hands (plus right foot drop) for me to be admitted to hospital on July 31st, where I was diagnosed after 2 days of tests (high eosinophils, CRP & ESR) with Churg-Strauss Syndrome by the rheumatologist & started on a treatment course of high doses of IV steroids, as well as 150 mg of oral cyclophosphamide (which the rheumy said that I needed because of the muscle & nerve damage). The drug Advair was discontinued, as it may have been the trigger for the autoimmune illness. I also started taking Morphine Slow Release 30 mg twice a day for pain (decreased that to 15 mg. fairly quickly), Flexeril 5 mg three times a day for muscle spasms, Elavil 25 mg (now 20 mg) before bedtime to relax muscles & nerves so that I could sleep and Calcium tablets & Fosamax to prevent osteoporosis with the Prednisone - plus asthma & bronchitis meds of Pulmicort, Nasonex, Claritin andVentolin.
The rheumatologist decreased my Prednisone from 60 mg. to 30 mg within the first 3 months, then tapered it very gradually through 2002 & 2003.

With the Prednisone & Elavil came cravings for sweet things & I gained back the weight that I had lost plus 20 more lbs until I decided that I had to cut out a lot of my favourite things. Except for a CMV (cytomegaolovirus) infection which hospitalized me in March, 2002 with dehydration & spiking fevers, I did not have a flare until the fall of 2003 when the rheumy decreased my cyclophosphamide to 100 mg because of a too low white blood count. The increased peripheral neuropathy symptoms were treated with an increase of my Prednisone to 5 mg daily.

The rheumy decided that I should change immunosuppressants from cyclophosphamide to Imuran (which has been used successfully to treat Wegener’s) this fall & I am now up to 150 mg. The PN symptoms are greater than when I was on cyclophosphamide, unfortunately.

I'm looking forward to corresponding with others in the group.

Maureen K. CSS Aug. '01
NB, Canada

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