Arthritis

Hi Trent

I had my last round of immunotherapy in April of 2020

— had pretty severe joint pain — a prednisone taper helps, but it’s also my understanding that a steroid like this works against the immunotherapy effectiveness.

In January and February of 2021 I tapered my prednisone dosage and stayed on 5 mg of prednisone daily and it really helped.

I stopped taking it in preparation for the COVID vaccine and have not taken it again.

Joint pain has returned, but not nearly as severe as before.

Hey Trent,

Arthralgias – joint pain – are very common with immunotherapy and they can occur while on therapy or strangely – even after.  The degree and duration of the pain vary a great deal from person to person.  I had a fair amount of joint pain during my 2 1/2 years on immunotherapy and it waxed and waned even off therapy.  However, mine was not debilitating.  Some of us are able to treat with NSAID’s and time.  Others have to treat with steroids and drugs more commonly used for arthritis.  A dear one – Jubes (Ann Louise) – of this forum suffered from severe joint pain that impeded all things in her life was treated with infliximab.  As of last posting is doing very well.  Here is a post I wrote regarding her process and joint issues – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/02/for-jubesand-rest-of-us-anti-rheumatic.html

And for some beautiful peace, I share this which Jubes shared with all of us:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/beautiful-music-from-dear-friend-i-have.html

I wish you my best.  c

Thanks for the links Celeste. And to Trent, arthralgia make me feel like an old lady. I only did prednisone once in the beginning but weaned off to see how I would do.  Its tolerable now and does not interfere with activities. I am hoping pain disappears after Pembrolizumab is stopped, but sounds like that varies person to person.

Have you been checked for adrenal insufficiency? This caused me horrible joint pain to where I could barely walk up a few stairs. Went undiagnosed for a year and had some other bad effects on my body.

I’ve been dealing with some pretty severe arthritis for the past year and a half (Nivo for a year with polymyalgia rheumatica like symptoms. Nivo failed and started Ipi). After the Ipi kicked in, every joint in my body hurt. I’ve been on 10 mg of prednisone since starting Nivo. My oncologist had me try sulfasalizine which did nothing. He put me on remicade/infliximab (last infusion was 3 weeks ago). It seems like it’s starting to work (definitely not an over night cure all).  Time will tell 🙂

Hi Trent, here is more on the topic of arthritis:

To quote: “Key messages:

Immune checkpoint inhibitor (ICI)-induced inflammatory arthritis (IA) may persist after ICI cessation.

Longer ICI exposure, receipt of combination ICI therapy and a history of other immune-related adverse events increase the risk of IA persistence.

Immunomodulatory treatments were efficacious for symptom control while having no apparent effect on tumour response at follow-up.

Persistent arthritis may be associated with better tumour response (complete or partial response)”. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7031780/)

I had severe arthritis in all my joints but especially feet, ankles, hands, lower back and shoulders and neck. These were to the point where they wanted to give me pain meds but I refused. Instead we settled to go the physio therapy route which helped tremendously. I still have issues but nowhere close to the extent I had in the past when I thought I would actually be permanently disabled. So for me, my arthritic pain got better after about 12-15 months of severe issues. I do not know if this is normal nor how prevalent it is with the other melanoma patients?

Hope you find relief soon and please look into physiotherapy. I highly recommend it.

Melanie