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A MyMyelomaTeam Member asked a question 💭
Chapel Hill, NC
July 12
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Answer Summary

Members shared their personal experiences using steroids, especially Dexamethasone, as part of their treatment plans, with many reporting... Read more

Members shared their personal experiences using steroids, especially Dexamethasone, as part of their treatment plans, with many reporting serious and lasting side effects. Several members described developing Cushing's Syndrome from prolonged use, which caused weight gain, hormonal imbalances, and in one case contributed to a heart attack, while another member shared how steroids damaged their leg ligaments and required lengthy hospitalization and relearning to walk. A recurring theme was the importance of discussing steroid use closely with doctors, tapering off slowly rather than stopping suddenly, and following up with specialists to manage side effects.

A MyMyelomaTeam Member

So sorry. I hope the side effects disappear.

July 14
A MyMyelomaTeam Member

I was on Dexamethasone for five years. I took 5, 4 mg tablets once a week which equals 86mg per month, Prolonged exposure to dexamethasone causes Cushing's Syndrome which hper produces Cofrtisol. I gained between 40-45 lbs. Now my Dr, discontinued Dexamethasone and I am seeing an endocrinologist to regulate my normal hormones and loose the weight,

July 13
MyMyelomaTeam

Steroids are very commonly used as part of myeloma treatment plans. They help fight the disease, boost the effectiveness of other medications, and can ease nausea from chemotherapy.

That said, they do come with a range of side effects that are worth knowing about. Common ones include:

- Weight gain (from increased appetite Show Full Answer

Steroids are very commonly used as part of myeloma treatment plans. They help fight the disease, boost the effectiveness of other medications, and can ease nausea from chemotherapy.

That said, they do come with a range of side effects that are worth knowing about. Common ones include:

- Weight gain (from increased appetite and water retention)
- Sleep problems
- High blood sugar levels
- Mood changes
- Weakened bones with long-term use
- Immune system suppression One MyMyelomaTeam member described their steroid experience by saying their appetite was "through the roof" — so the hunger is real!

The good news is that many of these side effects tend to ease up once steroid treatment stops. It's always worth having an open conversation with your doctor if any side effects feel hard to manage — they may be able to adjust your dose or suggest ways to cope.

July 12
A MyMyelomaTeam Member

Thanks for the information.I shall follow this up.

September 23
A MyMyelomaTeam Member

Thanks for the information, I shall follow this up.

September 23

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