Swollen And Tender Legs From Actemra? (Top voted first)

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My wife has been on Actemra for about 6-7months now and her doctor says it's working, my wife disagrees. Due to her having to be on prednisone (very low dose 10mgs daily) she has now been diagnosed with Cushings as well. She is the most advanced RA patient this doctor says he has ever treated and that since her neck is deteriorated to the point of coming apart, he says she has to stay on the Actemra to slow down the progression. She feels worse every single day. She was misdiagnosed for 10+ years and by the time we found a Doctor to believe her it was too late to stop it. She was to far gone. She has gone from 140lbs all her life (shes now 51) to 270+ and nobody seems to have an answer other then it's from the steroids and pain meds, neither of which she can stop. Her legs are so swollen and reddish purple, and are so tender that she can't even walk on them anymore. She can't even have a sheet over them due to the pain of the weight of the sheet. She eats very little and it doesn't matter. Is there anyone out there with anything even close to what she is going through or is her case unique and hopeless. She is so sick of feeling sick and hurting that it scares me. Help?

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1

After reading up on all the side effects associated with Actemra (Tocilizumab) I can certainly see where many of those problems you mentioned are stemming from.

The MayoClinic seems to have the most extensive list of side effects (from weight gain to swelling to joint pain, etc..you name it & it's probably listed on there):
mayoclinic.com/health/drug-information/side-effects

I would encourage you to have a look at that list and reconsider the risks vs benefits of using so many medications. Perhaps this calls for a more natural approach?

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2

Hi, I am amongst the small percentage of RA sufferers who have a very aggressive type. My disease progresses exactly as your wife's symptoms. I was on a modifier that worked miracles for me for a year or so. But then it started to fail. Now I've had my first infusion of Actemra. It's not doing anything for me except causing symptoms.

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3

My mom has swollen legs and feet. Her legs are bright purple and she is always in pain. She has been on Actemra for about a year now, she has RA, not very aggressive form. She is on prednisone and she can barely walk. We would like to know some natural ways to get better. Please help

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4

rachel her dr is aware of her leg swelling,pain and discoloration. has he checked her kidney functions and her heart. what about diabetes. deffinatley keep her legs elevated and compression stockings will help. i use epsom salt in the bath along with a sports alcohol in the bath water. i know this sounds really simple but you will be amazed at how great your legs and back feel when you get out of the tub. i do this several times a week. sometimes when i hurt so bad i get up in the middle of the night and take one of these baths and then sleep like a baby. a little essential oil to make it relaxing helps too.

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5

Your story is just like mine! What was the modifyer you were on? I was on Xeljanz. After one wonderful year it stopped working. I really don"t feel good about starting on Actemra!

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