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A MyAmyloidosisTeam Member asked a question 💭
Rocky Gap, VA

Does anyone else take Dexamethasone more than just the day of chemotherapy? Trying to understand why my partner is having to start off taking it four days on and four days off for 4 to 6 months? That seems like a lot to me. I wanted to check in with you all before presenting the question to our hematologist next week. I appreciate any information you can give!

October 13, 2023
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A MyAmyloidosisTeam Member

I'm only taking it the day of treatment

October 20, 2023
A MyAmyloidosisTeam Member

I only had to take it the day of treatment.

October 18, 2023
A MyAmyloidosisTeam Member

We were able to speak with the doctor and he placed her on a treatment plan where she takes 40mgs the day of treatment, which is great because it raises her blood sugar and causes concerns, and she has had to take insulin for the first time in her life. Her PCP gave her a sliding scale insulin pen that she can gauge the units to what her body needs. She only needed 3 units the day after her first treatment, and she has had 8 units total today. That dexamethasone makes her jittery and gives her a headache the day after, but at least she isn't having to take the original dosage of 40mg four days in a row (four days on and four days off) throughout treatment. I don't think she could have stood that. That you all for the input, I sure do appreciate everything you throw my way! Hope you all are doing well, and your treatment and progress is going smoothly. Many hugs and good vibes to you all! ❤️

October 27, 2023
A MyAmyloidosisTeam Member

I took it the day of chemo. 20mg. When I went into remission I asked my Oncologist if I could continue taking it but 4mg each day. I continued that for a number of weeks and decided to wean myself off. The Dr thought it was time but told me not to go "cold turkey" so we agreed that I would take 2 mg daily which I have now done for about 10 days. I am about to cut the dose to 1mg and after a week or so will make a call the doctor ad let him approve stopping it or give me some other advice.
That is what I did. Your mileage might vary!

October 13, 2023

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