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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Living with Linalidomide (Revlimid) What Is Your Experience and How to Overcome

A MyMyelomaTeam Member asked a question 💭
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what

Struggling with lenalidomide is extremely common. Many people start this drug expecting it to be “maintenance” or “easier,” and then feel surprised — and sometimes discouraged — when side effects begin to shape daily life. The truth many patients eventually learn is this: most people do not stay on their original dose or schedule, and that is normal.

Quality of life matters just as much as lab results.
How It Often Feels Over Time
Many patients describe going through phases:

At first, it’s… read more

January 23
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Answer Summary

Members shared their varied experiences with lenalidomide (Revlimid) for multiple myeloma, with most emphasizing that dose adjustments are... Read more

Members shared their varied experiences with lenalidomide (Revlimid) for multiple myeloma, with most emphasizing that dose adjustments are normal and necessary for managing side effects like diarrhea, fatigue, mouth sores, and swelling. Several members described finding success with lower doses or modified schedules (such as 5mg on seven days off seven, or 10mg for 21 days with seven days off), as well as using medications like Imodium or Lomotil for digestive issues, while some found relief by switching to Pomalyst or stopping Revlimid altogether when it no longer worked or side effects outweighed benefits. A recurring theme was that quality of life matters as much as lab results, and adjusting treatment to what is tolerable is not failure but smart self-advocacy, with many members encouraging others to embrace life and not let the medication stop them from doing what they enjoy.

A MyMyelomaTeam Member

Lenalidomide makes me tired and I think it's made my feet swell. There's a
lot of side effects.

BjB

January 26
A MyMyelomaTeam Member

My husband said he experienced tired ness, soreness into the mouth

January 24
A MyMyelomaTeam Member

I have been on Lenalidomide for 3 years. (Maintenance after SCT) Started at 10mg 28 days straight no breaks - after one year switched to 10mg 21 days and then 7 days off because my neutrophils dropped below 1.0. All good now. A bit of diarrhea and the common fatigue - totally doable. Labs are great. Still in remission.😊

January 23
A MyMyelomaTeam Member

I have been on it now for almost a year. I started off with 25 mg. My body couldn’t handle that much so my doctor had to get it down to a smaller that my body could manage which turned out to be 5 mg seven days on and seven days off and so far that has worked for me and the only problem i have had also it’s just sometimes I feel a little tired and the diarrhea is a big problem, but I can control that with medication that they have given me but so far since I’ve come down the doses from that 25 mg to 5 mg is been OK. Hope that helps.

January 23
MyMyelomaTeam

How can you manage side effects and stay on lenalidomide (Revlimid) for myeloma?

You're absolutely right that struggling with lenalidomide is common, and adjusting your approach is normal—not a failure. Many people find that working closely with their doctor to manage side effects makes treatment more sustainable.

Common Show Full Answer

How can you manage side effects and stay on lenalidomide (Revlimid) for myeloma?

You're absolutely right that struggling with lenalidomide is common, and adjusting your approach is normal—not a failure. Many people find that working closely with their doctor to manage side effects makes treatment more sustainable.

Common side effects people experience include:

- Diarrhea (sometimes starting 17-24 months after beginning treatment)
- Fatigue and insomnia
- Muscle cramps or spasms
- Rash
- Swelling in arms or legs
- Digestive issues like nausea or constipation
- Respiratory or digestive tract infections

Steps to make treatment more manageable:

Talk openly with your oncologist about troublesome side effects—they may adjust your dose or schedule. One MyMyelomaTeam member shared being hospitalized due to dehydration and diarrhea from Revlimid, and their doctor eventually discontinued it when symptoms continued.

Don't take over-the-counter medications or change your diet without asking your doctor first, as these can interact with treatment.

Remember that at least 20 percent of people taking lenalidomide experience side effects, and your healthcare team can help you find ways to manage uncomfortable symptoms while maintaining quality of life.

January 23

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want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what
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