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A MyMyelomaTeam Member asked a question 💭
West Monroe, LA

Anyone experiencing pain from taking this med. Especially sharp pains in upper arms.

June 7
 · 
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Answer Summary

Members responded to a question about sharp upper arm pain from Lenalidomide 5mg, with several pointing out that Xgeva, a bone-strengthening... Read more

Members responded to a question about sharp upper arm pain from Lenalidomide 5mg, with several pointing out that Xgeva, a bone-strengthening drug, was likely the cause rather than Lenalidomide itself. Many members shared their own side effect experiences, including severe leg and foot cramps, neuropathy, and cognitive issues, and offered practical tips like silicone hand eggs, foot massagers, and calcium and magnesium supplements to help manage symptoms. A recurring theme was the importance of self-advocacy, tracking all side effects, and pushing doctors to adjust doses when needed.

A MyMyelomaTeam Member

Joseph, Are you taking a bone strengthening drug? My initial doses of Xgeva caused a pain like what you are describing in the upper arms.

June 10
A MyMyelomaTeam Member

Just wanted to update on my foot. It is always going to be slightly swollen, hurt, and need to rest it BUT the good news is the Fracture has healed and grew a piece of bone near Fracture that I guess protected it. I have Arthritis in foot now but happy that I can walk on it better knowing I am not walking on a fracture that had not healed.

June 16
A MyMyelomaTeam Member

@A MyMyelomaTeam Member,
Nick,
My cramps in my feet and legs were so bad my toes touched my shin, and even pushing my foot down with my other foot, it was such a hard cramp, it was like pushing 250 lbs of weight. That all stopped when I changed my diet and took supplements. Salt, caffeine and carbonation all take calcium out of the bones and muscles. Avoid salty foods too. I now take MRM Bone Maximizer III (Calcium & Magnesium) with extra D3 to absorb it, and K2 which tells the calcium to go to the bones instead of clogging the arteries. I also take Vitamins C, A and E complex to enhance the calcium supplement. I started this is 2019, so it’s been working for 7 years. I hope this helps you. I couldn’t sleep back then.
Paula🌹

June 11
A MyMyelomaTeam Member

Revlimid made me lose ability to find words. I had only taken 3 5mg pills.
Not on that anymore.
Scan showed no stroke.
This experience was frightening.
They then tried Ninlaro. Explosive GI issues. Not on that anymore.
I’m now on 300 mg Empliciti and 4 mg of dex every three weeks via IV.
My numbers are slowly going down.
I still get neuropathy on left leg but it’s manageable.
Keep track of all side effects. Anything that is not normal for you and present to your provider.
I find I have to advocate for myself because they have a set of clinical protocols they follow.
I push until I get them to lower dose to see how I handle.
Hope that helps you advocate for yourself.
Wishing you good health!!!!

June 14
A MyMyelomaTeam Member

No, I didn't have arm pain when I was on this drug. Let your doctor know.

June 8

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