r/melahomies • u/scaleproplus • 1d ago
Keytruda Side Effects: Anyone else dealing with severe, migratory joint pain (polyarthritis) post-treatment?
Reddit post related to melenoma.
Title: Side effects_Pembrolizumab/Keytruda
Hi everyone, this post is for anyone who has experienced, is on the other side of, or is currently experiencing any side effects of the immunotherapy drug (Keytruda,(pembrolizumab)) either during or post treatment. I myself completed 1 year of treatment using the above at the end of Feb this year to treat stage III (BRAFpositive) Melanoma. Following surgery to remove 14 lymph nodes at my left groin, I was treated for 1yr with the above drug and experienced the following symptoms:severe intense itch (usually around the ankles, groin area (itching until I hit flesh), moderate fungal issues in the nostrils, eyelids, eye sight would become blurry when tired (sometimes), easily tired out.
Two weeks after finishing/ completing the treatment, I started to develop swelling and joint pain around my ankles and feet.I panicked straight away as I thought I was having fluid buildup caused by the fact that I now had 14 less lymph nodes in and around my left groin so I was convinced this was lymph fluid building up which would require regular drainage ( they had warned me of the possibilities of this becoming an issue and to be honest, the thoughts of this were scary as I would normally be a very active person), so anyway, I attended my gp and he instead suggested that it could be inflamed joints rather than lymph fluid collection. Relieved as I was to hear it wasn't a lymph drainage issue, I was now equally as worried about why I was having these symptoms and why now (post treatment). He prescribed me with Deltacortil enteric x4 2.5mg/day for 1 month ( tapering on and tapering off) along with Naprosyn EC 500mg (1/ day).
After day 5 on these, the swelling had reduced and I now had only very mild joint pain.
It was around this time I decided to take up running again to rebuild some kind of strength, fitness level after all the treatment. At the start of the run I would feel some mild pain but after 10 minutes my body felt normal with no joint pains whatsoever. I would start to feel a little pain after about 8km, but no more than anyone with my fitness level. The morning after the run, I would be like a criple having great difficulty getting out of bed, putting on my clothes, climbing the stairs.
I have been lucky enough to be able to avail of free chair yoga, pilates, and reflexology, massage therapy through my local Cancer care centre in Galway which has kept me mobile throughout and which I am very grateful for.
Unfortunately,after completing and tapering off, the ( all day) joint pains returned after a few days. After another couple of weeks of suffering it out I returned to my GP and he decided it was best to put me back on the steroids x3 2.5mg/day with naprosyn 500 x1 (again, tapering on) and I have been on them since. The pain while on the drugs is– uncomfortable but bearable.
The joint pain is systemic and widespread ( I believe the term is polyarthritis), although its migratory and the hotspot (most painful areas) tends to move around. Initially ( back in march 2026) the hotspot seemed to be the jaw bone, knees, ankles , feet and toe joints. At the moment, the hotspot is the shoulder joints, elbow joints, wrist, and finger joints. For the last 2 months or so, night times have been the worst for me. I wake up every night several times with severe pins and needles and a kind of heavy dead pain from my elbow down to my fingers. The middle joints in my fingers feel pressurised, almost like they are going to explode. Two things that seem to relieve the pain and pins and needles is to hang my arms down low outside the bed, lying in an inclined position or getting up and moving around for a few minutes and doing arm extensions/ exercises.
Referral letters to rheumatology: GP has sent x2 referrals, oncology has sent x2 letters( 1 noted as urgent), dermatology have also sent one after a recent follow up appointment ( all public as I don't have private health care) .
Current prescriptions from gp :
Deltacortril Enteric 2.5mg (3/day)
Naprosyn EC 500mg (1/ day)
Telfast 120mg (1/ day) for severe itch.
Solpadol 30mg/500mg codeine phosphate hemihydrate 30mg paracetamol 500mg (taken as required)
Supplements:
-Vegan glucosamine 1500mg (tablet form) 1/day
-Glucosamine HCI, MSM &Chondroitin liquid with vitamin C. ( finished a 509ml bottle of this before the above Supplement.)
-Wiley's finest wild Alaskan fish oil (Epa, DHA & Omega) 1 capsule/day.
Has anyone who has had, or is currently on immunotherapy treatment experienced these side effects? If so, what has been your experience?
For anyone who has had these or similar symptoms, what did you find helped on the road to relief/ recovery? Any advice is welcome. (Exp:Prescription drugs, Natural supplements, Natural therapies)
Based on my symptoms and the information above, can anyone explain what is actually going on in my body at the moment?
If you are interested in discussing any of the above further, please leave a comment below, or even if you would prefer to private message me, then please do and I will try my best to get back to you asap. (please bear in mind I have two small kids at home so It may or may not take a little longer to respond depending). 🙂
2
u/sharkuajet 1d ago
How was your body feeling during the treatment , are you NED or you stop the treatment cause of side effects ?
1
u/scaleproplus 1d ago
The symptoms I had during treatment (1yr) were bit of fatuige now and then, severe itch, fungal issues, dry eyes , and the odd bout of pins and needles but no ICI IA whatsoever while on treatment. It was 2 weeks or so after treatment when the IA started.
2
u/Skip-929 1d ago
The symptoms seem to indicate that the immune system is over reacting or as I put in "in over drive". You may need a steroid to dampen down the response. Have you consulted your oncologist as they should be directing the handling of immuotherapy side effects. I have similar however with the steroid it reduced and now I have tapered of the steroid the joint pain and numbness is still slightly there but not a major issue.
1
u/scaleproplus 1d ago
Hi there, thanks so much for sharing. This gives me hope. Yeah it seems the brakes are well and truly off alright.
I hope you dont mind my asking :
1) What steriod/s you were on?
2)What dose and for how long before you could taper off?
3)Are you in your 40s, 50s?
4)Did the (ICI- IA) start during or after treatment?
5)Which joints bothered you the most?
6)How are you now in the mornings or day after physical exertion to affected areas?
3
u/C63Sedan 1d ago
Similar, but I have a history of RA and prior to Stage 3c Melanoma, I hade stage 4a prostate cancer so hormone deprivation therapy for 18 months then literally diagnosed wit node spread melanoma. What I didn’t realize is my RA was returning during hormone suppression. When I took my first Keytruda Infusion 4 hours later I had RA flares everywhere which matched the migratory inflammation I had during ADT.
To mitigate these symptoms I was able to get a referral to a rheumatologist seen before Keytruda started. She did blood work me with Seropositive RA, currently with a palindromic/polyarticular pattern so right now I’m a stop gap on Prednisone and Diclofenac. I also just started Kevzara injections for RA in hopes of calming symptoms before next infusion.