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Swelling in ankles and feet while taking Revlimid

by LindaO on Wed Jul 15, 2015 10:41 am

Hi all,

I have been on Revlimid (25 mg, 15 mg, 10 mg) for 5 1/2 years, since my multiple myeloma diagnosis. I have never had a stem cell transplant, and my labs are pretty stable. I feel fortunate that I have tolerated the Revlimid well all this time, the only side effect I have had to deal with is intestinal issues.

Now I have been noticing swelling in my ankles and feet. Not really bad, but enough for me to question what might be going on. I must add that I had my right hip replaced at the time of diagnosis due to damage from the multiple myeloma. The swelling is a bit worse in this leg.

I don't know whether this is a concern for my multiple myeloma doctor or my orthopedic doctor. Has anyone experienced this?

Thank you in advance for any insight into this. The Myeloma Beacon is the best!

Linda

LindaO
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2010
Age at diagnosis: 58

Re: Swelling in ankles and feet while taking Revlimid

by indy mike on Wed Jul 15, 2015 11:31 am

Hi LindaO,

I have experienced periodic swelling in my lower ankles. It hasn't caused any pain. I showed it to my myeloma specialist and she said it was caused by water retention, which could be caused by the Revlimid. She didn't seem concerned. I haven't noticed swelling in any other part of my body.

indy mike
Name: Mike Mathias
Who do you know with myeloma?: Self
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 51

Re: Swelling in ankles and feet while taking Revlimid

by LindaO on Wed Jul 15, 2015 11:47 am

Indymike,

I just looked at my test results as of one month ago. Creatinine level was in range, but on the high side 0.91 (0.50-0.99). Two months before this, it was 0.79, so it's rising. My doctor wasn't con­cerned, either, but I'm a little concerned about it because the swelling (although not terribly bad) seems constant.

LindaO

LindaO
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2010
Age at diagnosis: 58

Re: Swelling in ankles and feet while taking Revlimid

by Nanine on Wed Jul 15, 2015 11:50 am

My mother is also on Revlimid and I noticed swelling in her ankles and feet as well. When we spoke with her oncologist, it was determined to be water retention. She now takes Lasix (furo­se­mide) every other day to help with that, as well as a potassium supplement.

Nanine
Name: Anna Tedone
Who do you know with myeloma?: Mother
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: Swelling in ankles and feet while taking Revlimid

by KLR on Thu Jul 16, 2015 8:21 am

My husband had ankle swelling from the Revlimid. Compression socks worn all day, and putting his feet up when he could, solved this issue.

KLR
Name: KLR
Who do you know with myeloma?: Husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 58

Re: Swelling in ankles and feet while taking Revlimid

by LindaO on Thu Jul 16, 2015 2:24 pm

Thank you all for your replies.

KLR, the compression stockings were something a friend told me to try, and I will now, knowing they could be of help.

LindaO

LindaO
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2010
Age at diagnosis: 58

Re: Swelling in ankles and feet while taking Revlimid

by CarolP on Thu Jul 16, 2015 9:14 pm

I've been on Revlimid almost 2 years. My feet and ankles do swell. Compression hose and elevating my feet when possible during the day have helped. Also elevating my feet at night. Put a large pillow in bed. Put you feet on the pillow at night. Or elevate the bottom part of your bed. Bricks work well under the legs of the bed.

CarolP

Re: Swelling in ankles and feet while taking Revlimid

by Tracy J on Thu Jul 16, 2015 9:17 pm

Hello there! I've dealt with swelling in my legs on several different occasions, all related to malfunctioning plasma cells. I second everything others have already written here.

However, I just wanted to add that it is possible for escalating light chains to damage the kidneys, leading to swelling. Whether or not this is the case is something your oncologist should be able to address.

Good luck!

Tracy J
Name: Tracy Jalbuena
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2014
Age at diagnosis: 42

Re: Swelling in ankles and feet while taking Revlimid

by mikeb on Thu Jul 16, 2015 11:20 pm

Hi Linda,

Just a cautionary note. You probably already know this since you've been on Revlimid for awhile now, but just in case ...

One of the more serious side effects of Revlimid is blood clots. And one sign of a blood clot is swelling in a leg - more swelling in one leg than the other, as you mentioned you've seen.

I think it is likely that what you're seeing is the water retention that others have mentioned. But it wouldn't hurt to give your doctor a call to let him / her know what's going on, just in case it might be something more serious.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Swelling in ankles and feet while taking Revlimid

by Nanine on Fri Jul 17, 2015 9:13 am

Hi Linda

I agree with Mike as well. When my mom started on Revlimid last year, we both noticed that her right leg was very swollen and warm to the touch. I took her for an immediate scan and there was indeed a blood clot. She then started taking Coumadin (warfarin) daily. Though you have been on the Revlimid for quite some time, you may want to have your oncologist send you for a test to rule out a clot in the leg as well.

Anna

Nanine
Name: Anna Tedone
Who do you know with myeloma?: Mother
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

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