Hurting bone, joints and muscles…. Help

My husband has same side effects from Keytruda. For a while, Ibuprofen 3x day helped. Then that stopped helping, and now he's on prednisone, which is helping a little but not much. I've heard a lot of people get great results from prednisone. Good luck to you! I hope you are pain free soon.

It went away within 6 weeks of my final infusion of Keytruda. Prior to that it felt like I was 90 years old (aches all over, especially in the knees and surprisingly the elbows). I miss those days when I felt young again (after Keytruda) now I’m starting Opdivo and it is building back up.

Hi Anonymous, well. all i can say is for one, welcome to the world of immunal therapy and its joint, muscle, and bone pain! its a "debilitating" way of letting you know you are in the fight and you are very much alive…I too deal with the very same pain, almost every morning i wake up on fire! my usual cocktail includes my Hydrocortisone regiment,  3 Advils, and 3 strong cups of McCafe filled "pods" for my trusty ol Kureg! it hurts bad, then disipatates in like 2hrs…i to take Opdivo, i just completed my last infuse of Yervoy, 4 in total {as a combo} and will continue nivo till further notice. I was on Keytruda for #7 infusions but stopped due to progression. It sucks eggs but its keeping us alive! do what i do, when you feel pain, remind yourself that your very much ALIVE! and thats a good thing…

Hi

I have been struggling with this for 3 years. For a while I could not move at all. Treatments have included prednisone, infliximab ( which worked amazingly, but the cancer started to grow again and they were not sure if there might be a connection) I see a rheumatologist regularly and he is trying to get the best result he can with a combination of immune suppressants like plaquenil and sulfazalasine, anti inflammatory drugs like orevail, and occasionally I need steroid injections in my knees, hips or shoulder. My oncologist wants me to try infliximab again but the rheumatologist says two years ned, he doesn’t want to take any risk. I am working and getting around ok but can’t do my long walks or yoga so l guess that’s a small price to pay. Hope something here helps you. Best of luck. Anne-Louise 

Welcome to our world.  I have had pain in ankles, even in bed. Knees. Should is better. Even in petscan it shows degenerative osteoarthritis.  I had ankle and knee xrays, referred to a rheumatologist.  She says i do not have RA.  I am having really bad joint pain in my left buttock.  Hurts to walk bend sit.  I have a prescription for Meloxicam that helps.  Otherwise Aleve is a good otc nsaid to take.  Aspercream helps alot, even the generic aspercreme that is just called arthritis cream or pain relief cream.  Also Biofeeze, my daughter bought me the spray and i bought the rollons from Amazon.  The new thing is getting medical marijuana many of my friends are starting to use it for same purpose.  That is my next step.  I am  71 so these are seniors starting to use these for RA and osteoarthritis.  Soaking in epsom salt bath.  I have bucket in living room sometimes i soak my ankles while watching  tv. I did not thinkj we can take prednisone while taking opvido?  That's why i got weaned off to start it.  And RA dr said the treatmentt for RA if i had it would counteer effect my immunotherapy.  Gentle water aerobics helps.  We are still because we hurt to use our muscles, and vice versa.  But we have to keep moving!! 

Oh yes, this is a thing.  I was on Pembro / Ketruda for a year and a half and ended up with autoimmune inflammatory arthritis.  Wrists, shoulders, back, hips, knees, all hurt.  For some reason my elbows, neck and ankles were spared.  I'm not sure why, but I'm grateful. 

I'm now on a daily 5mg dose of prednisone now after tapering down from 80mg.  I will probably be on this for life, but this and the other drugs help me get out of bed in the morning.  So I'm ok with it. and my Rock Star Doc is ok with it.

It took me a long time to find my way through this, (as it started while I was on Ketruda but really blossomed after I had already stopped due to progression) but eventually we figured it out and now after 2 knee replacements I'm getting back to some semblance of normal. 

So have hope, there's a way through this and you'll find it.

Shalom

Julie

I have been on a clinical trial of Opdivo/Yerboy for almost a year (only one treatment to go) and started developing the exact same symptoms about half-way through.  I have been on prednisone and it pretty much took care of all the pain.  I asked the doc if the prednisone would have any affect on the effectiveness of the immunotherapy, and he said it wasn't big enough of a dose to matter.