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A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

I’m starting new treatment in October. Teclistamab and immunoglobulin infusion. Just want to know what I’m in for. Side effects?

8 hours ago
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A MyAmyloidosisTeam Member

I was a participant in a Teclisimab trial through Atrium/Levine Center for Hematology, etc. I took TEC every two weeks via infusion from April 1 through June 2026. According to my physician, Dr. Barry Paul, all my light chains are now "invisible", meaning I no longer have symptoms of Amyloidosis. Of course, it is never gone unfortunately.

TEC kills your immune system, so during the time I was taking it, I caught colds and coughed a lot. I also got UTIs - once to the extent that I was hospitalized for a week when I was in sepsis. In June, they started infusing me with IVIG (hope that is the right order of the letters) to rebuild my immune system. I continue to get a 3-hour infusion each month and will through the end of the year. Feeling much stronger now.

Best of luck.

7 hours ago
MyAmyloidosisTeam

Starting a new treatment can feel both hopeful and nerve-wracking — totally understandable to want to know what's ahead!

Teclistamab is a newer bispecific antibody treatment being explored for amyloidosis. While specific community experiences with Teclistamab aren't widely documented yet, the immunoglobulin infusion Show Full Answer

Starting a new treatment can feel both hopeful and nerve-wracking — totally understandable to want to know what's ahead!

Teclistamab is a newer bispecific antibody treatment being explored for amyloidosis. While specific community experiences with Teclistamab aren't widely documented yet, the immunoglobulin infusion component is often used to help support the immune system during treatment.

Some general side effects to be aware of with this type of therapy can include:

- Fatigue
- Fever
- Increased infection risk (since your immune system may be affected)
- Cytokine release syndrome (flu-like symptoms after infusion)
- Low blood cell counts Because your immune system may be more vulnerable during treatment, staying current on vaccinations and being cautious around illness is especially important. Discussing COVID-19 precautions with your care team is also worth doing before October.

The most important step is having a detailed conversation with your specialist about what to expect specifically for your situation, since side effects can vary based on your overall health and which organs are involved.

Hang in there — being informed is a great first step! 💪

8 hours ago

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