Hi, has anyone experienced very painful arthritic pain after chemotherapy? I finished chemo in November 2024 (I did paclitaxel, carboplatin, Epirubicin and Cyclophosphamide. I also had two rounds of immunotherapy, filigastrim injections and dexamethasone steroids. I had stiffness, bruising and pain on/off throughout chemo, but since finishing chemo the stiffness has been constant and awful. At night it’s hard to sleep as I can’t breathe because my back hurts so much. I struggle to walk as my hops hurt so much, and I’m bent over like a 90 year old when walking (I’m 45 and was previously really fit and healthy). The GP/oncologist haven’t really a reason or solution. The only thing that helped was going back on steroids, but that’s not allowed long term (co-codemol, naproxen don’t stop the pain) and now I’m being offered morphine. On top of the side effects of my new chemo I feel totally destroyed and alone. Has anyone else recovered from arthritis after chemotherapy? Life is just so hard - I’m also incontinent from my new chemo and not sure how much longer I can keep going as it seems there’s no solution to any of the issues I’m having. Thank you.
Yes, I have a similar experience although I have had a more complicated cancer journey. EC and Paclitaxel in 2022 for my primary TNBC. Pembrolizumab and NAB-Paclitaxel in 2023 when liver mets were discovered. A serious immunotherapy related adverse event causing an acute kidney and thyroid injury, plus lung damage. 9 months of steroids (initially very high dose then a slow wean) to try to resolve that lot. Once the steroids were down below the 15 micrograms a day level, I started to realise I had a major problem with arthritis. I am having a hip replacement in 3 weeks time (the other done before I had cancer). I more or less constantly have physio on both shoulders. On bad days my hands seize up. I also have peripheral neuropathy in fingers and toes from the Taxanes.
Hi Coddfish, I’m so sorry you’re also having a rubbish time with all the side effects. They sound horrible and the immuno impact sounds very serious, I’m so sorry you’ve had that. I hope it is under control now? I was also taken off immuno due to side effects also, but not as bad as yours.
Did they ever tell you why you have arthritis? They told me it could be many things (immunotherapy, but also chemo - especially paclitaxel, also the menopause that I’ve been put into by chemo, and also steroid withdrawal). But there’s no definite reason and no cure. I don;t know whether I should be trying to move more, or to try yoga, or a massage. I just keep keeping on in the dark… but the pain is brutal, I woke up unable to breathe due to the pain this morning - it happens several times every night but each time it scares and upsets me - it eases during the day and I’m just very stiff (like you in hips, fingers, but at night it’s my back that stops me breathing). Do you take pain killers, and if so which ones worked? The best thing I tried was dexamethasone, but it comes with other horrible side effects! I’m scared but thinking of trying morphine next.
The closest I have got to an explanation is inflammation. When my immune system overreacted in September 23, it set off a massive amount of inflammation. The steroids I took for 9 months controlled it but didn’t completely eliminate it. As I weaned off the steroids it became more noticeable. Each step down was awful until I adjusted.
I don’t really take pain relief. I found paracetamol didn’t do much. I couldn’t use ibuprofen whilst my kidneys were damaged but can use it occasionally now, so take a slow release tablet on days when I need to be more active. I also sometimes rub ibuprofen gel into the most sore joints. Codeine blocks me up so I won’t use it and I am allergic to stronger opioids. Things like glucosamine and omega 3 sometimes seem to help but I wonder if that’s in my head. Keeping moving definitely helps. Physiotherapy helps.