Hi, my name is Janelynne. I am 55 years old and I have recently been diagnosed with CSS. I was unofficially diagnosed with CSS in September 2004 when hospitalized after being sick for 3 months and being treated with antibiotics, steroids, and inhalers by my primary care physician for sinus and upper respiratory infections. To make a long story short, at the end of August I went to my allergist and he gave me a steroid injection which caused splinter hemorrhages on my nails. After seeing a cardiologist I was admitted into the hospital within a few days and diagnosed with endocarditis, which was going to be treated with antibiotics. But, while taking blood tests to find out which antibiotic to use, they found my eosinophil level was at 57%. Apparently the CSS was affecting my heart at this time as well.
I remained in the hospital for a week while five specialists kept taking blood tests to try to find a bacteria, which never happened. Finally, after 5 days, the pulmonologist was called in. He took samples of the fluid around my lungs but the lab results were inconclusive. However, he insisted it was Churg-Strauss from all my symptoms. They immediately began an IV steroid and my eosinophil level dropped dramatically within 24 hrs. I went back to work in about 6 weeks.
My oncologist took over prescribing and slowly lowering the steroid over the winter. I had a few relapses when my allergist referred me back to the pulmonologist because my asthma had worsened and he needed to raise the steroids again to keep me out of the hospital. I had been told by my PCP that since my lungs were clear and I was seeing several doctors that I didn’t need to see the pulmonologist. And, no, I do not have that PCP anymore! The pulmonologist was sure I had CSS and started treatment with higher steroids and inhalers. After lowering steroids down to 5 mg, I ended up in the hospital again the end of May 2005. This time the diagnosis was hypereosinophilic pneumonia. EOS level was at 42%. This occurred 2 days after my mother was buried, which is a whole other story. Anyway, I remained in the hospital on oxygen for 11 days. Labwork and a bronchosopy once again confirmed the diagnosis diagnosis of CSS. It took me 3 months to get back to work this time. I came home from the hospital on 60 mgs of Prednisone, inhalers, etc. and I was very weak. Trust me, 60 mgs of Prednisone is no vacation!
We tried once again to wean me down off the prednisone but when I got to 10 mgs this last time my EOS started to go up again. So I had to be put back up again. We are now trying Cytoxan and I am down to 10 mgs again within this past week. I am also getting an Aredia treatment once every 3 months for my bone density since my last test had already shown some of the effects of the steroid. I already have osteopenia but I can’t take anything orally for it with all the other meds I had been taking.
At this point I am trying to find something to keep my stomach calm while on the oral daily dosage of Cytoxan. We have tried several different acid reflux meds but they all seem to cause shortness of breath. I decided I’d rather breathe than eat. I am feeling better this past week except being lower on the steroids I have noticed more muscular and arthritic discomfort which I didn’t have when on the higher doses, but I’ll deal. I’m just happy I can breathe better.
I found out this past week that all these crazy symptoms I’m having are the withdrawal from the steroid and that as we go even lower they may get worse. Oh joy, I guess this isn’t a good time to try to go off the Prozac as well! Anybody have good suggestions for dealing with the withdrawal symptoms? They’re worse than being on the drug! Chills, sweats, leg and foot cramps, fatigue, mood swings, and loss of appetite. With my lungs being the main problem, I have shortness of breath on just minor exertion. I have to go for a pulmonary function test in a couple of weeks. I have been so short of breath I sure hope it straightens out soon.
My next step is to have the breast implant removed which was part of reconstructive surgery after being diagnosed with breast cancer 5 years ago. The doctors don’t think it has anything to do with the CSS but I have this gut feeling that the silicone on the outside does not agree with my body. Besides, after all the ups and downs on the steroid and weight fluctuation, nothing matches these days anyway! And, since I got uterine cancer after being on the Tamoxifen for 1-1/2 years, I just don’t think my body likes drugs or any type of possible toxins in my system. My allergist says I am drug sensitive so the doctors have to be really careful with dosages, etc. The ENT doctor said he wouldn’t touch my sinuses, since I already have a 1 cm hole in my septum from when I had an operation for a deviated septum, which shows I probably had CSS many years ago. So I have to control my sinuses with sprays and a Neti cup treatment which, by the way, really helps.
So that’s my story. CSS has changed my life but the good news is I have a new grandson to take my mind off of it all. I just look forward to feeling good enough to keep up with him as he gets more active. He was an unexpected light of joy through these past 8 months. My daughter is now engaged and planning to get married in August ’07. I told the doctor I will need more energy than I have now to help plan a wedding. I am also a quilter and am doing some survivor blocks for the Susan G. Komen Foundation. Perhaps I can start a quilt for CSS and donate it to the CSS Support Group to raise funds for research.
I hope my story helps other CSS patients as we must all support each other through the ups and downs of this rare disease. Luckily, I have a supportive family, friends, co-workers, and most of all PRAYER to help me get through the tough times. I also do Yoga and meditation. I also have lots of support from a very special pulmonologist who keeps me sane even though as I told him, “The next time you send me to Mars for a few months, please request a Massage Therapist and a Chef!”
May God bless you as you deal with this rare disease. Hopefully with continued research we will perhaps even see some cutting edge technology for a cure in the future.