This is the fourth of a series of personal stories from patients and their families who have been diagnosed with Churg Strauss Syndrome. Our disease is very rare and these stories remind us that we are not alone. If you have a story to share please contactCindy, who is the "In Our Own Words" editor. Special thanks to Dawn for so eloquently sharing her story!
Pain, Prednisone, Prayer, Promises & Patience
by Dawn M. DesJardin
I say that I got CSS between 9 & 10:30 p.m. on November 3, 2004. However, I was diagnosed with asthma in 1996 at the age of 59, and I had been to a doctor once or twice in 1995 because I "squeaked" when I exercised and when I laid down at night.
Beginning in 1996 I used Azmacort and Serevent inhalers. I got along fine at first, then later a once a year shot of Kenolog was added to keep me feeling well. Then I needed it twice a year. In 2003 I went to an asthma-allergy specialist and he prescribed Advair and continued the use of Azmacort with it. Also in 2003, when I had a routine lung scan it was discovered I had nodules on my trachea and my lung. Those have been checked every 6 months and haven't changed. I don't know if they are any indication of CSS.
I did well until the fall of 2004. At that time I went back to the specialist and he added (temporarily) Mucinex and Ventolin and a vaporizer, which helped.
On November 3, I was very tired (but I had worked hard all day painting walls, etc.) and I went to bed at 9 p.m. At 10:30 p.m. I woke up with the worst muscle cramps I have ever experienced, in both legs and feet. When I tried stepping out of bed I found that my left foot was partially numb. The rest of the night was a blur of trying to sleep and painful cramps. For the rest of the week I experienced cramps at night but not as bad. In the daytime I had very stiff and sore muscles and felt tired. Also the numbness began to creep up and eventually I had (and have) some in both feet and legs. On Nov. 6th the pain began to change, and on the night of Nov. 7th I had the following symptoms -1) Both my feet hurt/burned/etc. all over and I didn't want anything to touch them. 2) Especially on my right foot it felt like a vise was hooked on the outside and wiggly electric worms were crawling in from that; 3) I experienced foot-drop on my left foot. 4) I felt like my legs had been scalded. 5) I felt little "electric wires" here and there all over my legs. I hurt terribly bad when I walked but worse when I sat and worse yet when I tried to lie down. I woke my husband up to take me to the emergency room at 5:30 a.m. on the 8th. (We live in a very small town with one doctor, two ARNP's, and a small hospital.)
Various drugs were tried that week, including 15 mg/day of Prednisone. At first I would think, "This is helping," then I wondered if the pharmacist gave me sugar pills. When I went back to the emergency room on Saturday, Nov. 13th my primary doctor had gotten the report back which showed my white blood count, and he had done some research. He determined Churg-Strauss Syndrome, which was later verified by a neurologist, a rheumatologist, and a nerve biopsy sent to the Mayo Clinic. He started me on 75 mg Prednisone. This made a difference! But it wasn't a fast cure. I hung on to my husband or used a walker to move about, and I still had lots of pain. Once I said to my husband, "I did have a perfectly wonderful life but Churg-Strauss came and took it away!"
The rheumatologist became my main doctor in prescribing drugs and doing routine tests. He first had me go down to 60 mg Prednisone and 200 mg Neurontin. When I tried to get down below 50 mg Prednisone two or three months later, the pain went up again. Methotrexate was added, I take 300 mg Neurontin 3 times a day, I've been able to go down to 25 mg Prednisone (and hopefully more soon), and I have less pain too. At first I took several pain pills a day, then 4 or 5, then 3, then 2, then 1, but on March 16 I got a prescription of 30, and as of today, April 13, I have 17 left! I have also used Lidocane patches on the worst places on my feet to numb the pain.
I had physical therapy for the foot drop on my left side, and it has improved quite a bit. I went from walker to a cane, and now it's hanging in the closet. I still have some nerve damage on both sides. The sensations on the bottom of my feet make me think there are pads, or sometimes brushes, under there. These sensations sometimes throw me off balance, and it's a little harder to feel the gas pedal when I drive. Right now, I still have some pain all the time, but it's more tolerable and I can do most of the things I did before CSS.
In spite of the pain, there has been more good than bad in this experience. I constantly thank God for being with me in all of it and this much recovery. I am amazed and thankful for our brilliant, caring primary doctor, and the fast diagnosis. I'm very thankful for my sweet, helpful husband, and family and friends.
Update, October 2005
I am now down to 1 mg of Prednisone! Wooeee! On the 24th of October I will go to 1/2 mg for 2 weeks and then off. The rheumatologist says I don't go off the Methotrexate or the disease will come back! The Neurontin stays the same but could possibly change later. I have a little less pain all the time! Still have "the pads" on my feet, but I'm pretty much used to them. I continue to enjoy life immensely.