Masha
04-27-2018, 06:07 PM
When I went for my infusion last week the nurses were explaining to other patients that they had a saline shortage due to the hurricane in Puerto Rico. I asked if I would get a limited flush and she said oh no, because of the medicine my doctor ordered, I got a full flush. She described my routine as Benedryl with a steroid chaser followed by a day of Rituxan. When I heard her describe it, it reminded me of the drink of choice by steel workers back in the 50’s. It was called a Boilermaker, shot chased with a beer.
I sat next to a woman who has Takayasu's. It hits the large blood vessels, and you can’t feel her pulse. She was on steroids, but now refuses them because of the weight gain.
My steroids are being decreased to 5. Last timeI eliminated them on my own I had a flare.
My blood work is improving, actually looks good. He didn’t do a C-ANCA on me this time, because I worry. Let me correct that, I get a bit neurotic.
I am feeling better and breathing through the night. I am also waiting for the other shoe to drop. Do any of you get that feeling when things are improving. How long will it lastkind of thing.
I couldn’t be happier with my Rheumatologist and ENT. They both are experienced with Wegeners patients, make themselves available to me and answer all my questions.
My A#1 husband charted all my blood work and consultations. He also celebrated his 75th birthday this week.
This last series of infusions exhausted me. So I will rejoin the world at my own pace. Plans for tomorrow are to sit on the back porch with my dogs and enjoy the spring.
Be Well.
Masha
I sat next to a woman who has Takayasu's. It hits the large blood vessels, and you can’t feel her pulse. She was on steroids, but now refuses them because of the weight gain.
My steroids are being decreased to 5. Last timeI eliminated them on my own I had a flare.
My blood work is improving, actually looks good. He didn’t do a C-ANCA on me this time, because I worry. Let me correct that, I get a bit neurotic.
I am feeling better and breathing through the night. I am also waiting for the other shoe to drop. Do any of you get that feeling when things are improving. How long will it lastkind of thing.
I couldn’t be happier with my Rheumatologist and ENT. They both are experienced with Wegeners patients, make themselves available to me and answer all my questions.
My A#1 husband charted all my blood work and consultations. He also celebrated his 75th birthday this week.
This last series of infusions exhausted me. So I will rejoin the world at my own pace. Plans for tomorrow are to sit on the back porch with my dogs and enjoy the spring.
Be Well.
Masha