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Joint Pain Relief
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Joint Pain Relief

› Forums › General Melanoma Community › Joint Pain Relief

  • Post
    • May 9, 2018 at 11:37 pm
    Jackie T
    Participant

      Has anybody found relief from joint pain, specifically knee pain due to Keytruda? I have been off Keytruda due to joint pain and being NED since October of 2017 after 13 treatments. I was put on low dose Prednisone to slow my immune system down and then my melanoma expert rheumatologist prescribed plaquinal and hydroxychloroquine which after 2 1/2 months I had to stop because my liver enzymes went sky high and the combo failed to give me any relief. A cortisone shot in my knee was short-lived. I’ve done physical therapy, water exercise, purchased new orthotics, taken tumeric, CBD oil, ibuprofen,  acupuncture, chiropractics, rest, ice, heat, and compression sleeves. Both knees are inflamed and it is painful to bend my knees, walk, climb stairs and sleep. Any suggestions out there? 

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    • Replies
        • May 10, 2018 at 7:42 pm
        geriakt
        Participant

          I had increased joint and back pain when I was on NIVO. It is a side effect. At the time I needed percosets for the back pain, but I limited my use.  Now that I am off of my NIVO I still have joint pain issues (I am 53 YO). I find the best way I treat it is drink a lot of home brewed green tea infuzed with fresh raw ginger and cinamon. By having it daily my joint pain is minimum to not at all, but I notice it return when I do not cook or use the ginger. 

          Tom

          • May 11, 2018 at 2:02 am
          Julie in SoCal
          Participant

            Hi Anon,

            Yup joint pain while on Nivo / Pembro is a thing.  There's a few of us on the board.  I also had autoimmune inflammatory arthritis in just about every joint but my ankles.  Wrists, shoulders, hips, knees, back you name it.  There were days when I couldn't get out of bed without the help of a Percocet,  Those were dark, dark days.

            My doc hit me hard with HD prednisone and that helped. I'm still on a low dose, but am back to functioning.  

            6 weeks ago I had a knee replaced and it's been amazing, not to have constant pain in my knee.  The other knee is going in early July.  I can't wait!!

            I know this isn't much help for what you're going through.  Just know you're not alone in this – and keep working iwth your doc.

            I wish you Peace!

            Julie

              • May 13, 2018 at 2:20 am
              aldrichdesigner
              Participant
                Ugh Julie, this sounds like what I’ve been going through. I’ve been on pembro/keytruda since July so I’ve had about 11/12 treatments, I don’t exactly keep count on here like most but it was once every 3 weeks for awhile and now it’s once a month because my side effects were so bad.

                The pain is very arthrital in my fingers, toes, ankles, knees and elbows. I have back pain too but that is due to damage from metastatic leisions on my spine that have eaten away at the structure. That has since been put on pause by the pembro thank goodness because it was causing a lot of damage rather quickly. But the constant pain is tough to deal with, it ends up being very very mental. And I don’t mean to say that i think pain is mental because I don’t think that but it’s been hard to admit what you can or can’t, more often than not, “can’t” do anymore.

                The knee replacement sounds like heaven and a double, my oh my. You enjoy that, I’m glad for you that they were able to do all that and insurance would approve it.

                All of my pain symptoms are .anaged by three drugs primarily. Oxy, gabapentin, and ibuprofen is all I’m taking for pain. There are other meds for the rest of the sysmptoms but those three are handling the pain for now. They are doing okay, not the greatest. Basically I wait 30-60 minutes everyday for my meds to kick in full strength before it feels okay to move around and tolerate the pain.

                I think all of our journeys are a little different while similar at times. It’s the craziness of this disease and it’s individuality. I wish you the best of luck with your on going experience and just remember to remind yourself what the alternative might be

              • May 11, 2018 at 5:24 pm
              cancersnewnormal
              Participant

                After 20 months on Keytruda, my knee ballooned to twice its normal size. I began having joint pain in fingers, elbows, jaw, shoulder, neck… then the other knee. Ugh. I "took a break" from the Keytruda (still on break, as I've had no recurrence in the last 20 months while being off) and the rheumatologist put me on Sulfasalizine. It took about 5 weeks to kick into full gear, but worked wonders for me. Some people have had some luck with it… others… no help at all. Buuuut… it may be worth a shot, as side effects with it seem to be super minimal in most, and it has no negative impact on the efficacy of your Keytruda treatments. 

                  • May 11, 2018 at 11:29 pm
                  Mat
                  Participant

                    Everyone is different.  I tried Sulfasalizine and it was like eating candy–no effect.  I've gotten decent (not total) relief from methotrexate and 5mg/day prednisone.  Difficult time getting off prednisone because I now have low cortisol due to long term use.

                  • May 13, 2018 at 8:27 pm
                  Sharon93065
                  Participant

                    Glucosamine chondroite, i buy the Move Free from Costco, take two daily, after awhile you will get some relief.  I have meloxicam for bad flare ups, but I save it for only that because of the liver numbers. 

                    Gentle water aerobics really do help.  I walk like a old lady, but I am,  71 and holding!! But i walk like I'm older, but I'm alive!

                    • May 16, 2018 at 4:33 pm
                    KAF
                    Participant

                      I met with an rhumatoid arthritis specialist and she did say it was an autoimmune response to the Nivo.  She gave me Meloxicam (anti inflammatory -non steroid) .  If i take it as soon as I start to feel pain, the pain doesn't seem to increase.  I do have flare ups but the meloxicam seems to work the best if I take it early

                      • March 28, 2019 at 8:16 pm
                      arethamorce
                      Participant

                        Guys has anyone ever consider trying CBD oil or medical MJ, Experts also recognize THC for its powerful ability to reduce pain. It does so by potentiating the glycine receptor, including and even helps to relieve neuropathic pain. Additionally, studies show that THC can be incredibly beneficial for individuals suffering from multiple sclerosis (MS). The use of THC was able to lessen their symptoms and improve their overall condition. The different strain has a variety of uses and effect depending on your needs. You may check this https://www.gyo.green/humboldt-seed-organisation-blue-dream-hmb-bld-f.html This strain has a very potent effect on chronic pains like back pain and joint pain and a lot more.

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