IVIG: what is your work arrangement and how are you able to care for family during treatment?
35 year old female diagnosed with Sjogrens, small fiber neuropathy ( via. Biopsy) and large fiber neuropathy in 2021 along with a mirad of other issues. My small fiber neuropathy is severe full widespread body pain, especially in legs and feet. I experience fatigue, migraines, body flares, joint pain , issues regulating body temperature, and other sjogrens and neuropathy symptoms.
My doctor suggested IVIG in 2023 when I was not married yet with no kids and it was approved. Despite my suffering at that time , I didn’t go through with treatment out of fear of side effects, concerns about how I would work ,naive hope that things may improve on their own.
I got married in 2024 and gave birth to a baby 9 months ago . my symptoms are worsening and I am strongly considering going through with Ivig treatment to improve my ability to care for my baby and to improve my quality of life.
My doctor is recommending a 5 day Ivig treatment that must be done within a 7 day time period each month in the hospital. She did say at some point I could potentially transition to a nurse doing in home administration of the Ivig .
I work remote Mondays and Fridays and go into the office Tuesday-Thursday. I am a project manager so I could do the job completely remote but my employers wants people in person those 3 days. For my job I am leading meetings throughout the week for different projects.
My questions are:
- What is your work arrangement during your treatment? Working remote, FMLA, short term disability, stop working completely, or some other option to have time for treatment? Are you able to work during treatment?
- For those with kids how does the treatment impact your time and ability to care for your kids/family?