Hi, my name is Jody and I've been reading this board for a while, but decided I needed to post. My husband was diagnosed with diffuse scleroderma 2+ years ago at the age of 46 and we've been on the familiar roller coaster since then.
We live in the Twin Cities, Minnesota and as we both work at the U of M, my dear husband started seeing a rheumatologist at the U. We felt it was important to see a specialist in scleroderma and after some research decided to visit Dr. Wigley at Johns Hopkins. We made our first visit at the beginning of 2005 and it was a big relief for both of us to talk to someone who really knew the disease and had ideas for possible therapies.
My husband was put on Cellcept and a number of other medicines. Our sense was that the disease process slowed down through 2005 but continued to march forward. His symptoms included the hand tightness, which spread up into his upper arms as well as tightness on his torso and into his face. He continued visits to Baltimore approximately every 3-4 months.
We visited Dr Wigley in April of this year and he was concerned by the continued progression of the disease. He encouraged us to consider IVIG therapy. My husband started exploring the feasibility of this with our insurance company and once he got the go-ahead from them began treatment in June.
He had monthly treatments for the 1st 6 months and is trying to stretch it out to every 2 months. It has truly been a miracle drug for him. We have seen the symptoms slowly decrease and the tightness in various parts of his body lessen. He has gained back some weight and has energy to pursue his usual activities. He still suffers from Raynaud's fairly badly and although the tightness in his hands has become less, he still has limited flexibility.
We know that you can never know what scleroderma might throw at you next, but at the moment we're more hopeful than we have been since he started with the disease.
I see that a few others are receiving IVIG treatment and wanted you to know what a great thing it has been for my dear husband. I feel very lucky that it has not been questioned by our insurance and hope that with more documented success that more insurance companies will cover it and make it available for more patients.
I've blathered on for long enough but wanted to share our story with you.