Tomorrow will be 3 weeks on from the emergence of my serious immunotherapy adverse event involving kidneys and thyroid. The management plan remains high dose steroids, weaned down over time, backed up by extra detailed renal tests from time to time. All supported by consuming high volumes of fluid.
On the steroid front, I started with 3 days of oral prednisolone, at 60mg per day.
I then escalated to 3 days of IV methyl prednisolone, at 80 mg per day.
I then returned to the 60mg oral for 4 days.
Then 9 days at 50mg per day.
Meanwhile my creatinine is stable at 135 or thereabouts, without having to have had extra IV fluids for a few days (this is from a high of 350ish at crisis). My baseline had been 80 or under prior to the immune event.
So yesterday, the great leap was taken to put me down to 40mg oral per day from today.
To complicate matters, I did a check on my drugs supply on Saturday to ensure I had enough to get me through to my next face to face, and realised I had been making an error on the thyroxine replacement tablets. I had been asked to take 1 tablet a day. I had 2 packs and expected them to be the same. They weren’t, one was 25mg and the other 100mg. Double checked my discharge letter, I was supposed to be taking 125mg and you can probably guess which one the Queen of short straws had picked up to start.
So on Saturday I went up from 25mg to 125mg levothyroxine as well.
Both of these drugs impact on my adrenal system. After a period of time on very high dose steroids, your body clamps down its production of cortisol (one of your stress management hormones). When you lower the steroid, your adrenal system has to try to recover to fill the gap.
So today, I am effectively having some steroid withdrawal symptoms on top of everything else. Easily stressed. Feeling anxious. More jittery and less able to focus. Heart rate a bit fast. Plus of course it’s nearly 3 weeks since I slept properly.
My mantra is definitely one day at a time.
