My name is Suzy. My health issues began thirty plus years ago with Sjogren’s. I had dry scratchy eyes which the ophthalmologist diagnosed as Sjogren’s but my rheumatologist did not agree with that diagnosis. It also started with a strange occurrence at snow camp for my daughter. In the evening when it was mighty cold, I sat down on the stone fireplace to warm up my backside. Suddenly I experienced a searing itching feeling on my rear end. When I looked at it I was covered in huge welts which eventually dissipated by that evening. Then I experienced hives and welts on any bony prominences when exposed to the cold.
At that time the tests for cryoglobulinemia were not adequate enough to pick up the antibodies and my rheumatologist said he did not want to label me. So for the many years I learned to avoid cold exposure and learned to tolerate the dry eyes and dry mouth. After too many corneal abrasions I had a punctal cautery performed on both upper and lower lids to retain as much tears as possible. To this day I still use moisturizing eye drops and all Biotene products for the dry mouth, which has caused extensive dental cavities and extensive costs. When I asked my rheumatologist what I could do for these problems he just told me I was getting old. That did it; I found a new rheumatologist who did confirm the Sjogrens. We tried various medications to increase the saliva and help stimulate tears, but NONE of the medications did any good.
Then in the spring of 2011 I experienced something new, a purpuric rash on my legs. The rash just showed up one day. This made me set up a visit to the rheumatologist whereupon he ordered about twice as many blood tests as he had ever ordered. That is when the cryo test came back positive.
The petechiae have come and gone many times but in the spring of 2012 we found monoclonal gammopathy. I take Plaquenil to address the gammopathy. Next health event made my ankles and lower legs erupt with a flurry of itching, ulcers and open sores. My arms also began to develop skin problems.The dermatologist gave me Kenalog spray and the rheumatologist gave me Prednisone. When we determined that this was probably a severe photosensitivity I changed behaviors: I stayed out of the sun, dressed in long pants, long sleeved shirts, hat and used sunscreen when outside. I stopped the Plaquenil after 2-3 months because I developed a low grade headache which would just come and go. I had very little patience at that point in time.
This is where I stand now, September 2012, waiting for the next issue to surface. I will have more blood tests and see the rheumatologist in October. I am hoping he can answer my many questions. Up to now my questions have mainly gone unanswered. This connection to other people with cryo has opened up a new source of knowledge. Before, I had not found many answers elsewhere. I am grateful that the Sjogren’s has only plagued me with livable problems for all these years. I know how bad it can be from other people’s stories. However, the surfacing of the cryoglobulinemia and vasculitis has presented new challenges and a bevy of questions.
For more information on cryoglobulinemia go to Alliance for Cryoglobulinemia.
Published: January 2013
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