After almost 3 weeks back on 20mg prednisolone per day, I am disappointed to still be suffering breathlessness on moderate exertion. However the stats don’t lie. I have been regularly walking a set route at the fastest pace I can manage, using my Garmin running watch. So I can see my pace has marginally improved over that time, and perhaps more importantly, my heart rate isn’t as extreme. My oxygen saturation levels also aren’t dropping so badly upon exertion.
On Wednesday I had a face to face follow up with oncology. I already knew the recent CT-pulmonary angiogram had confirmed I did not have a pulmonary embolism. I was not surprised to find the CT showed “ground glass opacities” consistent with immune related damage. These are areas where there should be air, but instead there is something blocking the airway - in this case inflammation. It’s not particularly extensive, thank goodness. The consultant and I agreed it was time to try stepping down to 15mg of prednisolone for the second time, in the hope I can operate at that level this time.
I started the new regime yesterday. I seem ok so far and the walking routine was no worse today. I am not sure how long it will take for any issues to surface as all I know is it had become a serious issue around 5 days in last time. Other than the need to manage this issue, I am keen to get the steroids down, and preferably gone, as soon as possible. I have now been on them for 12 weeks and although I am generally ok, I can’t fully taste food. I also get very upset every time I see myself in a mirror. I have developed the full on ‘moon face’ look where the sides of my face and under chin area are puffed out to the extent it’s distorting my mouth. I have large grey bags under my eyes. The fact that my eyelashes and eyebrows are back, as it’s now 3 months since I had treatment, doesn’t really compensate.
The kidneys have stabilised at a point a little worse than I had hoped for. Creatinine not budging from the 100-105 range and urine generally a bit foamy indicating the presence of protein.
To cap off, or perhaps bottom off, the tale of the immunotherapy related adverse event, I am also developing regular issues with wind and sloppy motions, with oncology wondering if I have some colitis to add to my bag of effects. My speciality registrar, who has a reasonable experience with Pembrolizumab, has never seen someone collect so many areas of damage. Equally she didn’t expect me to survive the initial critical phase, but I did. And I am still here, hopefully improving a little bit day by day.
