Prednisolone? I was on it for 2 months to mitigate kidney inflammation caused by immunotherapy. I was on a minimum dose (for me) at 30mg a day for 2 weeks and then tapered 5mg a week. I wasn't keen to go on it either, but there was no alternative on offer. But it did its job and I was back on the nivolumab after that. I was lucky not to have any side effects from it. I was going to sleep at 2-3am though, spending my time reading all sorts of white papers on immunotherapy outcomes, steroids and how long it takes steroids to get the kidney function back to normal.
The problem with this situation is that it is a step into the unknown. The theory is you take the steriod, inflammation reduces, things return to "normal" and you can re-challenge with the immunotherapy (perhaps). But it might not work like that. You may find inflammation doesn't reduce or the taper results in the symptoms, why you are on the pred, returning. You can then end up on longer use than originally intended.
Immodium is an over the counter medicine so little concern (to me).
If you get an adverse reaction to the immunology then evidence suggests it results in better long term treatment outcomes.
Hi Mum, thank you for taking the time to reply. I developed a mild form of colitis as a response to my immunotherapy with Tecentriq. I have been on prednisolone for about three months now in varying doses but manage to get it down to the threshold level of 10 mg in time for my three-weekly treatment. CT scan tomorrow so I'll see whether the side effects are worth it
I had a serious immunotherapy related adverse reaction in 2023 and needed prednisolone. I was started on 60mg a day and had to briefly go onto an IV steroid to get an even higher dose into me. It took 9 months to reduce at a rate that managed my initial problem (primarily an a acute kidney injury, but I had other damage too), and then wean off completely. The first few months were awful. Very little sleep, jitteriness, inability to taste anything. I got to a sweet spot once I was down to about 15mg a day, this was 3 or 4 months in. Reducing from there was difficult because my lower order inflammatory problems (pneumonitis, bowel problems, general achiness) would flare up. It’s now over a year since I stopped treatment. Long term consequences are a significant arthritic flare up (I have subsequently had a hip replacement which dealt with the worst bit), some muscle weakness, being left marginally pre-diabetic, and the start of a cataract. On the positive side, my kidney function returned to normal and my thyroid function is replaced with levothyroxine.
I was also very worried about going on steroids, but very clear I needed it to try to save my kidneys and possibly my life, as that was in the balance in the early days.
Plus the immunotherapy (Pembrolizumab) had worked wonders on my cancer and I remain in remission
If you click on my name it will take you to my profile. There’s a link at the bottom of it to my blog. The immunotherapy / steroid story starts in September 23.
As for Immodium, it was a regular feature of life when on chemo and also as I weaned from the steroids. It’s a very useful drug
Hi Coddfish, thanks for your feedback. I had my last scan on Friday and will wait for results to see if immunotherapy is working (after 5 cycles). I suppose that my relatjvely minor abdominal issues are nothing compared to terminating immunotherapy and going on to a more stringent chemo regime, which I am not prepared to do anyway
