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Keytrua Infusuon causing joint pain and swelling

Forums General Melanoma Community Keytrua Infusuon causing joint pain and swelling

  • Post
    PA
    Participant
      Husband began keytruda every 3 weeks in Jan 2016, received infusions evwry 3 weeks (with no side effects other than some fatigue). Was off keytruda for 3 months due to brain tumor which was successfully removed 100 percent.
      Now has been back in keytruda for 6 months and has experienced very severe swelling and joint pain. The doctor says it is a side effect. He is on oxycodone, morphine and a symthenic steroid..however the pain is still dehabilitating. He is now disabled. Anyone else experienced this? Thank you in advance and God Bless.
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    • Replies
        DaveNB
        Participant

          Hello! I experienced the same side effects. I made it through 10 Keytruda infusions Feb. '17 through Aug. and then I had to take a break. I had swelling of fingers, knees, and ankles. Severe joint pain also. However I  managed with ibuprofen and tylenol. I was able to still work. For me it was about 10 wks. before I started to feel better after the last infusion. I would say I am back to about 85-90%. I also had very low hemoglobin number.

          I had lug mets which which are now gone! I would do it all over again if I have to. My Nov. scan showed new nodules after seeing reductions in my May and Aug. scans. A needle biopsy of the "new" mets proved benign (pseudo-progression?). I thank God always that I responded to the Keytruda!

          I  hope your husband's pain subsides. I wish him and everyone here success against this disease!

           

            Brian j
            Participant

              Hi, I have been on Pembro for 6 months I  originally had  bone Mets in sacrum. I have had pain and arthritic-like flair-ups hips, knees, spine, ribs, neck ect. Most current reports show decline in Mel activity in my sacrum, but continue to have increasing pain from thoracic vertebrate not sure if this is due to side effects. I was recently to a pain specialist at MD Anderson. He prescibed Physical Therapy, also gave me a script to higher dose 5% lidocain patches. I have been using Aleve and some tylenol for pain,as well as, Gabepentin for nerve pain. I am hoping the PT helps as I tend to feel better when active. The worst is getting out of bed in the morning with improvement as I move around. I hope your husbands condition improves very shortly and glad to hear he had success on his brain mets.

              Best Wishes!

            TexMelanomex
            Participant

              Hi Anon,

              I will be taking my 4th infusion of Keytruda this week and after my third treatment, I began to notice pain in my knees and ankles. For me, the pain went away about 2 weeks after the infusion. I am still early in this treatment process so I do wonder if the joint pain and flu-like symptoms (which have been consistent for me with each treatment) will increase as treatment progresses. I was told at the beginning that this might be a side effect of treatment. I hope that the Keytruda is doing its job for him and killing the melanoma and that once it does the joint pain and swelling resolve when he stops the treatment!

              Bubbles
              Participant

                I am sorry for what you and your husband are dealing with.  Yes, joint pain (also called arthralgias in articles) is very common with immunotherapy (like Keytruda and Opdivo).  Some patients can find relief with NSAID's like ibuprofen, others have to be treated with a break from therapy and immunosuppressive meds ranging from prednisone to remicaid.  It is all a matter of degree.  You may look on this forum for posts by "jubes".  She had significant problems with joint pain and found relief with remicaid.

                Here is a post on side effects of immunotherapy generally (nivolumab/Opdivo and Pembrolizuman/Keytruda are basically one in the same):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html  

                And here is a post (with many links within) regarding treating a wide variety of side effects caused by immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html  

                Hope you find some info that helps and that your husbands gets relief soon.  Celeste

                MovingOn
                Participant

                  I also have the arthritis-type side effect from Keytruda (4 infusions so far so I’m early in the process). I haven’t noticed swelling, yet. I take 400-800mg of ibuprofen each day and that helps. Like a few others have mentioned, activity seems to help but then afterwards it comes back.

                  cancersnewnormal
                  Participant

                    Hi Anon… sorry to hear about your hub's joint pain and swelling. I had the same thing at around the 18 month mark of Keytruda. My joints were hurting for a month or two with increasing pain. When I finally began losing sleep because the naproxen or ibuprofin were not enough, I had a serious chat with my oncologist. Not a fan of steriods and the blood sugar issues they give me, so I continued to get infusions without further treating the increasing arthritis. Finally, my right knee blew up to twice its normal size, and pancreatitis set in at 20 months of Keytruda. We decided it was time to take a break. The pancreatitis went away, but the joints were still horrible and had moved into the small joints of my fingers as well. That's when rheumatology moved in. I was started on sulfasalazine, in addition to prescription strength naproxen. It took about 5 weeks for the sulfa to kick in, and I weaned off of the naproxen. It brought me a huge relief. I know a few other folks that it worked for, as well as some that simply didn't have response to it. It seems that each of us is a little different in what it takes to smack down the arthritis. I'm still on the sulfasalazine and have been off of Keytruda since July 2016. My body and brain are holding clear, and my joints have been kept at a much improved level. The sooner your husband can take control of the inflammatory arthritis side effects, the better off his joints will fair in the long run. Hopefully he can find what works for him, with minimal side effects of their own to deal with. Ugh.

                    Jubes
                    Participant

                      Hi there

                      as bubbles mentioned I have had lots of problems with this. Has the rheumatologist had any mri to look at the problem? Mine showed ankylospondylitis which is on my spine and hips but although I have some pain there, I get really sore muscles and tendons mainly in my arms neck and torso. I didn’t really have much swelling in joints but when they look at the tissue in my arms and legs on ultra sound they say it looks like puff pastry. I have been off pembro for more than two years now and still struggle with this problem. I did pembro for about 9 months with a small break where I was pretty much paralyzed. I couldn’t even turn on my side in bed or get up for several hours in the morning. However….. thanks to advice from this board (bubbles and niki and others) I was able to suggest things to my doctors that had worked for others and I got back to work and continue to have my ups and downs but in general coping fine. These were what worked

                      1 prednisone up to 25 mg day (weaned off after a year) did not like side effects

                      2 remicade this solved the problem completely but after 6 months my pet scan showed 3 fold increase in tumor in my lung and we removed it surgically before it grew back any bigger. the drs were not convinced that there was no connection so I have stayed off remicade since then

                      3 sulfazalasine, plaquenil, ketoprofen combination.  This helped in the beginning with large doses sulphazalasine  but I still have some areas of fluid and inflammation in my arm which we are treating with cortisone injections for now

                      4 I am now starting to do more exercise to try to strengthen the muscles and if I didn’t have to work I’d be fine, but for my current problem area I might continue with the cortisone injections or get some surgery. Unfortunately the doctor said if I don’t use the remicade ( which he is very wary of) I may have more problems the longer I live…

                      so it’s always tossing up options and risk and it seems each person has different ways that this inflammation effects them

                      the good news is that since my lung operation more than a year ago I am NED  Yay!!! Dealing with the other stuff is part of my life now which actually is pretty fabulous, so I wish the same for you and your husband  

                      Anne-Louise 

                       

                       

                      Jubes
                      Participant

                        Just a short ps

                        my rheumatologist insisted I take OxyContin and endone. 

                        I took one which I hated the feeling of. It knocked me out but really the pain didn’t change much. I read a lot so I research most of the stuff I take. Since it didn’t really help my pain, I decided I didn’t need constipation and addiction added to my worries so I have boxes of the stuff untouched. Of course my pain may have been nothing compared to your husbands, but I’m so glad I came through without it. My other concern was that if at some stage I needed it in the future my body would need so much more to get any effect. Some days I was just in bed crying but more of frustration not being able to move. 

                        MelanomaMike
                        Participant

                          Hello Anon, man ol man!, i hope yer Hubby's pain subsides, it must be terrible to be perscribed those particular meds OUCH!!..I TAKE MY "2ND" Dose of Pembro tomarrow {Wed 13th Dec} and like your husband, have experianced joint pain in the mornings "mainly" in my armpits {shoulder area}, but subsides once i get moving. I cant quite say its from the Pembro, it has been going on way before my intraduction to the meds..I believe my pain is due to circulation problems because my area of desease {Melanoma} is in both lungs…Prayers his way! we will BEAT this stuff!

                          MikeW
                          Participant

                            Hi Anon…sorry to hear your husband is in this boat….My experience is similar to those that have already posted but I'll reiterate in the event my story helps. 

                            I only had 3 treatments of Keytruda and was practically disabled from joint inflammation/arthritis due to the automimmune response. I was first advised to load up on ibuprofen, then, the next dr's visit indicated my blood levels had gone up and the combination of joint pain and blood shut treatments down. I was put on 40 mg of prednisone until I felt better. That acted really fast for me and I was able to walk around with only a bit of pain

                            We tapered down to 10 mg and at the same time, I had my first scan which came back clean so I discontinued Keytruda and have been on prednisone ever since as the arthralgia continues. 

                            I'm also seeing a rheumatologist for the arthritis so this may be an option for your husband as well. 

                            MikeW
                            Participant

                              Hi Anon…sorry to hear your husband is in this boat….My experience is similar to those that have already posted but I'll reiterate in the event my story helps. 

                              I only had 3 treatments of Keytruda and was practically disabled from joint inflammation/arthritis due to the automimmune response. I was first advised to load up on ibuprofen, then, the next dr's visit indicated my blood levels had gone up and the combination of joint pain and blood shut treatments down. I was put on 40 mg of prednisone until I felt better. That acted really fast for me and I was able to walk around with only a bit of pain

                              We tapered down to 10 mg and at the same time, I had my first scan which came back clean so I discontinued Keytruda and have been on prednisone ever since as the arthralgia continues. 

                              I'm also seeing a rheumatologist for the arthritis so this may be an option for your husband as well. 

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