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Joint Pain with Nivolumab/Ipi

Forums General Melanoma Community Joint Pain with Nivolumab/Ipi

  • Post
    newmanmark
    Participant

      I completed 3 treatments of nivo/ipi before I had to take a break due to hypophysisits.  We now have that under control but decided to not do the 4th combo treatment.  Last week I had nivoluamb alone.  The following day I experienced joint pain (wrists, ankles, knees, etc).  It has continued for over a week and prevented me from going to the gym.  Has anyone else experienced this type of joint pain?  If so, how did you manage it?

      Thanks
      Mark

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    • Replies
        jennunicorn
        Participant

          Have been dealing with on and off joint pain myself. Some days are better than others… and currently some weeks are pretty awful. You can ask your onc to refer you to a rheumatologist.. I haven't decided to take that step just yet. I am hoping to hold off until I am done with treatment. Once off the infusions the inflammation should calm down some and then if I still need help with joints I'll see a rheum.. but that plan could change if I don't get a little relief soon. Currently I am taking a joint supplement with glucosamine and chondroitin, I only started it a couple weeks ago so I am still waiting for it to start working. I am also taking Meloxicam 15mg, it's an anti inflammatory. I also put turmeric powder supplement in my daily smoothie along with pineapple, both of which are natural anti inflammatories. And I have 4 different types of turmeric tea. I just started wearing knee support sleeves, which helps when doing physical activity. I am basically doing everything I can both naturally and with a not super strong NSAID and hoping it all starts to work so I don't have to go toward stronger drugs. I also have a prescription for percocet, but I don't take it very much. You might ask your onc if you can start on a regimen of Aleve.. my onc had me taking 600mg every 6 hours.. it didn't help me much which is why I switched to Meloxicam.. easier to take 1 pill a day anyway. It helps a little so far.

          Not my favorite side effect.. but I'll take it over some other ones. Hope you get some relief soon.

          Julie in SoCal
          Participant

            Hi Mark,

            Yes, there are a few of us here who have had mild to significant joint pain and inflammation after PD-1. Search this board for "joint pain" and "arthritis" and you'll come up with quite a bit of info.

            I'm  currently dealing with debilitating knee, back, shoulder and thumb pain with a rheumatologist.  And I'm on a high dose prednisone taper that has helped a bit, but we're still trying to figure out underlying causes.  I should have a treatment soon.

            Guess I just want to say, you're not alone and talk with your onc about your joint pain. 

            Shalom,

            Julie

            Bubbles
            Participant

              Hi Mark,

              I think if you took an MPIP poll, there would be 100% agreement that I am WEIRD!!!  So, I probably deal with everything in my life weirdly…ie…in a way that would not be at all what another person would choose! And that is more than fine!  But, I thought some of you might find it interesting to hear my dealings with the adversity that is immunotherapy – noting of course that I was dealing with nivo alone (not with ipi, which can be an even bigger pain when it comes to side effects) though WITH painful (and worthless!!!!) peptide vaccine injections during my 2 1/2 year study.

              At about the 3 month point, I posted this  (Zeno being a very large dog!!):  

              SUNDAY, FEBRUARY 27, 2011

              I feel like….
              …something the cat dragged in…after Zeno played with it for an hour! ;(

              Two years in:

              SUNDAY, DECEMBER 16, 2012
              Itchy, Stinky, Achy, and Tired….
              …the Four Horsemen of Anti-PD1!!!  Well, do what you will.  Just finished an INSANITY workout with Shaun T!!!!  Yeah, yeah…..it was only the Cardio Recovery set….and yes, I did feel like I was going to throw up once…but…  I DID IT!!!  So, there! – c

              I had arthralgias and itchy rashes pretty consistently throughout my treatment, but not nearly as bad as some.  I had significant difficulty with wheezing and mouth ulcers.  Here's a post from 2 years 3 months:

              FRIDAY, MARCH 22, 2013
              Me and Shaun T…cardio recovery…DONE!
              Have to admit…cardio recovery is mostly squats, yoga, stretches and deep breathing…but, given the state of my breathing just now…YAY!!!  For me!!!  B came in and gave me a bad look…oh well.  You shouldn't be surprised by much at this point, Buddy!!! Wonder if Jeffery could even keep up….  hmmm….. – breathe deep, seek peace – c

              And this last…I will post a link for you to check out if you are interested (or just really bored):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/three-miles-donetake-that.html  

              I guess it is pretty clear that I decided to push through, continue my exercise as usual (or as best I could) when I could.  I was luckier than many when it comes to side effects.  At the same time….I think had I not pushed myself, I'm not sure I would have come through as well as I did.  Not everyone is able to do that. Not everyone SHOULD do that.  And….as I fully admit from the start…I am weird.  Advil, benadryl and hydrocortisone cream figured largely in my arsenal….and they still do from time to time…though I am now almost 4 years post treatment.

              Whatever path you choose to make it through…I wish you well.  Celeste

              Anonymous
              Inactive

                Hi, Mark. Bearing in mind that we all react differently to Nivolumab, I have been on it since July, 2016. I have had joint pain throughout. It's not debilitating, but my running days are over. Managed with pain meds and Celebrex. I feel fortunate that joint pain is the extent of my side effects. It's all about the "new normal" now. Good luck to you and keep fighting. Cary

                cancersnewnormal
                Participant

                  Hi Mark! I didn't have the combo, but had all four Ipi (low dose) infusions 16 months prior to getting on Keytruda. I made it 29 rounds of that, and the joint pain became unbearable. I wasn't even able to get comfortable enough to sleep at night. When my knee swelled up as wide as my thigh, my oncologist sent me to rheum. This is becoming a more and more common scene with wider spread use of these immunotherapy meds. I'm huge into cycling, so I'm accustomed to pain… but this was something else, and I was off the bike for months. Losing the muscle strength that helps to support the joints made things even worse. Soooooo… the rheum has me on sulfasalazine. 500 mg, 2x daily. The difference has been night and day. I'm back on the bike (just starting back to some hill climbing), and doing yoga twice per week. I feel like ME again. Initially, the rheum wasn't happy about 20-50 miles per ride… but he's adjusted his thinking now. HA! ; )  Naproxen is good for inflammation, but you should probably check with your docs to ensure that it isn't going to cause any "bleeding issues" (sometimes with tumor breakdown, things get sloppy), or mess with your pancreas and liver too much (anti-pd1 can do enough of that on its own). Be careful with joint swelling, it can do more permanent damage to your joints. Getting off of the Keytruda helped me a little bit… but it is entirely possible that this is a sign your immune system has overreacted in your joints. The sooner you take control, the better off your joints will be long term. Your docs can do blood labs for common inflammatory markers. That might help determine whether or not you should investigate further treatment for the joint pain. 

                  Here are a couple of sciency type articles on the subject:

                  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

                  http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys&

                  Good luck! Hope you can get to feeling better and back into the gym pain free! Well… joint pain free… we all know that gym=pain… am I right? LOL! 😉

                  Mat
                  Participant

                    I'm also in the arthritis club and just posted under "Jubes" recent post.  Have has some success with Kenalog shots and prednisone.  Now starting methotrexate.  Will try Nikki's suggestion next if the methotrexate doesn't work.

                    Hukill
                    Participant

                      I have been on treatment for 9 months now and joint pain has gotten worse but I had it before I started. Hot tub works wonders, some days I get in 3-4 times mostly before bed and during the night as laying down seems to make the pain worse.

                      snow white
                      Participant

                        Yep, Dad had some joint pain and stiffness with Opdivo and it still continues with IPI, mind you Dad is also 72 years old 🙂

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