By Lynn Corwin,
I had a chronic cough from 2005 for about two years. I was treated with Singulair and other things…nothing helped. In March 2007 my troubles really began, but I wasn’t diagnosed with CSS until July 2008. In March 2007, my palms starting itching me something terrible. I was scratching my palms like a crazy woman. I called the dermatologist and he was able to see me within the hour. He prescribed 60 mg of Prednisone and, after a few hours and ice packs, the itching was totally gone. This happened several times over the next six months.
Then in September 2007 (at age 60), I got an exacerbation of my asthma. (I had had very mild asthma for several years. It was so mild that I never even took any asthma medication.) Well, the asthma got worse and worse and I was on several medications. (A classic sign of CSS is late-onset asthma.) It continued to worsen. I was hospitalized for asthma three times in 2008, once in March, once in April, and once in May. As soon as I was put on Prednisone, either by mouth or IV, my asthma got markedly better. Then when the doctor tried to lower down the Prednisone, back came the asthma with a vengeance. Then in June, I started to feel very achy and sore and my legs and stomach broke out in a terrible “rash”. There were “chunks” of purplish, blood-filled blisters. It was a sight to behold! Even the dermatologist called in another doctor because he had never seen anything like it.
So all kinds of blood tests were drawn and biopsies taken of my blisters, and I just continued to feel sicker and sicker. The dermatologist said from jump street that this was not a skin problem; there was something going on inside of me that was manifesting itself through my skin.
By July 7, 2008, I was so full of rashes and blisters and feeling sicker and sicker (the biopsies were not conclusive but they did show high eosinophils), I was admitted to the hospital for a 12 day stay. I had every test known to man, about 150 vials of blood drawn, CT scans, a bone marrow biopsy, a bronchoscopy with lung biopsies, etc. I was seen by my internist, my dermatologist, a pulmonologist, an infectious disease specialist, a medical oncologist, and a rheumatologist. After several days, they put their heads together and came up with the diagnosis of CSS.
The rheumy put me on 60 mg of Prednisone per day, and all my symptoms cleared up like magic. I had a lot of fatigue, but I got more and more energy gradually. Every two months the rheumy lowers my Pred by 10 mg, and I am now on 20 mg per day as of 2/1/09. I’m also on Methotrexate and a slew of other meds, but no asthma medication and no asthma symptoms.
I go to physical therapy twice a week, walk at least two miles a day on the treadmill, and I changed my eating habits entirely. I lost 52 pounds so far (which I definitely needed to do), and I’ve got about 40 more to lose. So the body is coming along fine, but my face and neck are “Prednisone puffy”. I have a really fat face and neck, but some CSS patients say that may go down as the Prednisone goes down.
I have filed for disability, but I am able to drive myself where ever I need to go, and I can do pretty much whatever I need to do. CSS has weakened my muscles (especially my thigh muscles), but physical therapy has helped tremendously. I lift some weights at home on my off days from therapy.
I see my rheumy every two months, my dermatologist every two months, my internist every three months, my ophthalmologist every six months, and my ENT every six months. My CT scan showed chronic sinusitis, but I’ve never had a sinus symptom or a nasal polyp.
As of late, I have had some tingling in my fingers, but it doesn’t get in my way. I hope this isn’t the beginning of peripheral neuropathy. I don’t know much about it, but I know it’s not a good thing.
So, for now, I’m am in remission and I have been. I hope I don’t have a “flare” any time soon.
I had a consultation with a famous rheumatologist at Cleveland Clinic (only one hour away) and I’m changing to her. She has a special interest in CSS, and there is a five year CSS study that I am going to be participating in.
So compared to some of the stories I have read on CSS website support group, I consider myself very lucky, symptomatically speaking.
I am trying to start a local (Cleveland/Akron OH) support group for CSS patients (with the blessing of the Vasculitis Foundation). Anyone with an interest please contact me.