Help has anyone else been diagnosed with induced immunotherapy hepatitis

I had a serious adverse immunotherapy event from Pembrolizumab which started last September. In my case the initial obvious damage was to kidneys and thyroid. Also hospitalised, IV steroids followed by oral steroids. 7 months later I am still weaning the steroids, it’s taken far longer than I expected because it has had to be done very slowly. At some points I have had to return to a slightly higher dose. The event caused major inflammation all over the place, some of which only revealed itself when the steroid dose became too low to suppress it. I have pneumonitis. I have inflammation in my spine causing some loss of feeling in my left leg. If all goes well I have another 3 weeks to run on the steroid wean.

It sounds like you have colitis, another lovely common result when this happens. Fortunately mine never got worse than a lot of wind generation. 

I wish you all the best in recovering as well as you can. I think it’s highly likely it will also have worked well on your cancer - that was the good thing to come out of my experience. Of course I had to stop the immunotherapy. 

I have blogged my way through my ‘journey’. The immunotherapy IRAE entries start in Sept 23. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

Hi thanks for sharing your experience it’s a bit rubbish I got out of hospital but back in is colitis the diarrhoea do you think and horrible stomach ache I am back on iv steroids for now until I see doctors tomorrow 

Sorry you are going through this. It does sound like colitis but hopefully they can find a way to relieve it. Have you also been on Pembrolizumab?

Yes still on it had it twice due again on 10th

Mine was stopped after my event. I had had 6 infusions. 

Ok he said on Friday if things didn’t improve may have to stop and of course been brought back into hospital now so will see what tomorrow brings

Hope you have as easy a night as possible. I know how awful it is to be on high dose steroids! I had weeks of jitteriness, poor sleep, not being able to taste anything, worrying about side effects from the steroids themselves. Hope you are able to reduce dosage more rapidly than I was able to. 

Cheers 

I have only just joined this forum so apologies if this response is too late to be helpful. I developed colitis from the Pembrolizumab - symptoms just as you discussed and confirmed with a colonoscopy. Was on high dose steroids for a few months which seemed to stop the colitis, gradually weaned off them over time and I am now fine. However I have not been able to go back on to the Pembrolizumab.

Never too late to meet someone else with issues from being treated with Pembrolizumab! My ‘journey’ has been a bit mixed. I also had to stop treatment after serious kidney, thyroid and lung damage. However, 9 months on steroids allowed my kidneys to largely resolve. The Pembrolizumab also enabled an almost complete response shrinking my liver mets right down. They stayed stable even though I had stopped treatment, so I was able to have them ablated and am currently in remission. I have really struggled to come off the steroids though. I have a lot of joint ache, a certain amount of gut trouble and also inflammation n my spine exacerbating the neuropathy I had from chemo. 

Have you moved onto a different treatment?