- February 28, 2019 at 4:31 am
Hello new and old friends!
Still living my NED life over here… which has meant dealing with non melanoma related issues for the past year. 2 surgeries 6 months a part.. my new record. Got my knee fixed up and then my shoulder. Physical therapist is basically my personal trainer.
Anyway, joint pain and inflammation is nothing new for me. I dealt with it prior to immunotherapy and since being off treatment it's continued to make life more difficult than necessary. So, I found a great rheumatologist, did a thorough exam, lots of blood tests, and it comes down to having some kind of unspecified arthritis. Now, the tricky part: treating arthritis.
Since most arthritis medication supresses the immune system he had me try Celebrex first, but unfortunately that did nothing. So, he contacted my oncologist to collaborate on best approaches and they've decided to start me on methotrexate. This is an immune supressing drug.. so I am a little apprehensive.
For my fellow joint pain/inflammation homies…. have any of you tried methotrexate? What are your thoughts on it? What arthritis treatments are you on that work for you and your oncologist is ok with too?
I really wish this wasn't something I would continue to deal with into my 30s, but oh well. I'll take dealing with "old lady" joints any day over melanoma!
- February 28, 2019 at 7:23 am
Hi Jenn, Congrats on living NED! I get along with 4 mg Prednisone (tapered down from 80mg four years ago) and an occasional 15 mg Meloxicam. (Mobic) I had taken the meloxicam after both knee surgeries and a recent tendonitis in elbow. My shoulder will probably be next on surgical list. I Could try one of the big dogs and feel almost normal… But, i am three months shy of 3 years NED and don't want to mess with that! Good luck with the Methotrexate and may your joints revert back to young lady status!
- February 28, 2019 at 1:23 pm
Hi Jen! I’m glad to hear you’re still enjoying that NED life but bummed to hear about the endless joint pain. I don’t have joint issues but my husband does and I know it can be a really painful thing to deal with.
That being said, I wanted to share that my husband has had great success with Enbrel. I believe it’s an immune-suppressant (he’s not the melanoma patient, I am) but after a couple of years of taking it, it appears that his RA is in total remission. He used to take the injections weekly, then every other week, then it moved to monthly and so on. It’s been months since he’s last taken one now and his doctor thinks it’s because he’s moved into remission. We also have a friend who had a near identical experience in Enbrel. I’m not sure if this is helpful to you but I wanted to share a story of hope.
In full-disclosure, my husband does also enjoy medical marijuana and we believe that the anti-inflammatory properties of that has helped as well but I really think it’s been the combination for him.
Anyways, I hope you get the relief you deserve soon!
- February 28, 2019 at 4:52 pm
Hi Jenn, I have been on one form or another of NSAID type drug since early 2000's when I was on Vioxx, taken off market, then next drug taken off market so I moved back to old school Arthrotec and continue to use it daily. I would say that Nivo has made my already sore spots, a little more acute but due to energy issues I haven't been pushing like I used to on my bike so for now Arthrotec is fine. Good luck with your journey!!!Ed
- February 28, 2019 at 8:17 pm
Jenn, I have a similar diagnosis–unspecified arthritis from nivo–since early 2017 when I began to taper off of nivo. I've been on some level of prednisone the entire time since. I started with sulfasalizine and it had no effect for me. I then moved to methotrexate. After the onset period, I had some success with it. At its best, it takes the edge off and more–but not 100% relief. I did not need any steroid injections for arthritis while on methotrexate and off nivo. I recently restarted Opdivo. I now find the methotrexate to be less effective and will likely need to supplement with steroid injections. I may also look to add plaquenil. If you find the magic bullet, please let me know. (Up to this point, I've sought to avoid Remicade.)
Scooby123ParticipantI jenn I don’t have info on what you are having to deal with. I see that you have had some information regarding trying different meds ect. Just wanted to say nice to here from you and glad you still Ned hun. Xx
- February 28, 2019 at 9:29 pm
- March 1, 2019 at 6:04 pm
Sulfasalazine is one of those old school arthritis meds that works really well for some, and not at all for others. Unlike Mat, I was super fortunate. I was off of the Keytruda, we started the sulfa combined with naproxen, for the first 4 weeks. It takes sulfa a little while to ramp up and kick in. I was on it for a little over a year. Thankfully the inflammatory arthritis went away, along with the pancreatitis that was brought on by the Keytruda. Still no relapse of the mel. Hope the methotrexate works for you. The joint pain was one of the most difficult things to go through by comparison to surgical recoveries and hypothyroid! Its hard to feel so old and hobbled in everything you try to do!
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