Prednisone Or Chemo?
What to expect with Prednisone and some tips when Tapering
My kidney function was dropping so fast in the late autumn of 2020 that I started pushing my consultant to get going with some kind of plan. The NHS is amazing, but I’ll never forget that sign hung up in the hospital. ‘YOUR HEALTH IS YOUR RESPONSIBILITY’
The music had always been ‘you should be fine. IGA often goes undetected throughout life and doesn’t have any effect.’
But this changed one Tuesday morning that autumn. I was looking out the window at the grass below. Nothing was growing. A man in a green coat walked past with his dog. I wondered if he’d helped cause this fuel crisis? All this panic. Probably not, I thought, toilet roll and fuel didn’t seem like his thing. The radio was talking about Katie Price being caught drink driving. A wolf in cheap clothing. The phone rang. Wasn’t she in that dodgy video with Dane Bowers? Oh it was the doctor. On the phone. The doctor spoke. His voice was quiet. I closed the window to hear better. And as he became louder I caught a glimpse of my kidney function as it fell down in the palm of an orange leaf. The man in the green coat swung a leg at it and missed but his dog was more committed to violence and ripped it to shreds. 90 percent to 30 percent. I let the phone fall out of my hand. Black bubbles filled my vision. All I could hear now was my breathing and the banging. Breathing heavy and the sound of wood breaking. I stood up and squinted and saw the split table and my bleeding hand. The appointment is in the post, he had said. I got up and found my dog and left.
All I could think was how we had a baby on the way. I was scared I wasn’t going to be much help as a dad.
The appointment was late October. The renal consultant offered me two initial options. The first one was scary, because you never think the sweet lady in the little white coat is going to say,
“we can start you on a round of chemo treatment immediately if needed.” I was 31 years old. Zero health problems a year before. Turkey with a bowl of Chemo didn’t smack me as the best Christmas dinner of all time. I’d had a turducken once. Things were going backwards.
Cyclophosphamide
Cyclophosphamide is a nasty little creature that suppresses the immune system. It’s a chemotherapy drug used for cancer and nephrotic syndromes. They offered it to me because IGA is essentially your immune system attacking you. The antibody in your tears to be precise, a leaky tap dripping onto your kidney filters, corroding them, causing scaring that stops them working. Crying on the inside killing you for real. So to mop the tears up you get some good ole chemo in there, suppress the IGA and maybe the kidneys filters stop burning away. I can get on with my life and the antibodies can go back to work, cleaning heartbreak off teenage cheeks and softening those old faces under umbrellas, dressed in black.
The side effects and long term issues are not great with Cyclo. It can cause infertility in men and the puking and sickness while you take it can be pretty heavy. I called my GP and asked him, “hands on the table, would you take Cyclo-whatever its called if this was you, in this situation?”
“I wouldn’t, ” he said. “Hand on heart I think you’re better off enjoying and getting through those first few months with the baby than bothering with it. The side effects vs the chance of it working don’t add up.”
That was that, then.
Onto Prednisolone. Preds
Prednisone is an immune suppressant and anti-inflammatory steroid. The first thing EVERYONE says to me when I mention I was on steroids is ‘at least you’ll get hench.’
Sadly, they aren’t anabolic steroids, which would be a weird treatment for Chronic Kidney Disease (CKD). Pretty similar effectiveness in suppressing IGA though, as it turned out.
Prednisone comes in horrible little white pills. I was on 40mg a day for 3 months. At that dose they turn you into mush, is pretty much how I would describe it. You get dodgy little spots on your face and your cheeks swell into your eyes. Moon face is what they call it. If you can, grow a beard. Then you just look like someone with a full facial skin graph instead of a celestial being from planet swollen. If you can’t, hope for a pandemic and the widespread implementation of masks. Preds can work for some people but they did not work for me. I was coaching a football team at the time. I guess the lads could see something was going on but they never mentioned it. My feet had become so enlarged from edema I could hardly get them in my running shoes. I would turn up to training in my biggest black coat, whatever the weather. Red and Black Bobble hat. Red and Black shoes with the laces undone, as wide as they were long. Often exhausted and always in a mood.
It’s funny though, because the second I was out into the cold air everything all of that stuff was forgotten. I was back as the football man. Strong and thinking, worried and excited. Emotional about football and the men and boys in my team. If any of the players had mentioned how I looked I doubt I would of noticed.
Escaping for a while, however you do it, is something I would recommend anyone suffering from CKD to do. Probably anyone with a chronic or terminal condition. Feeling normal. Or at least pretending to, kept me going through the hardest two years of my life.
Tapering Off
The drug is manageable and the side effects are not supposed to be as bad as Cyclophosphamide. Obviously that’s not the same for everyone but, largely, I got on with my life under the cloud of being tired, fatigued and a bit down. If they had worked I would of taken those symptoms every day of the week. However, the fact that Prednisone did nothing for me made this whole situation pretty
difficult. I was relieved to stop taking them and instantly felt better once they were out of my system. That ‘tapering’ process takes a little while though.
I would recommend taking a B Vitamin supplement while you’re on prednisone and especially when you taper off it, particularly B5 because it helps regulate cortisol.
Why do you need cortisol regulation and supplementation when you taper off prednisone?
Prednisone is similar to the naturally occurring Cortisol, which is the body’s primary stress hormone. When you take prednisone your body stops producing as much Cortisol. Essentially the drug is doing the the work so the body adapts and lowers its own production.
However, when you taper off you’ve suddenly got less cortisol in your body. Your body hasn’t worked out it has to produce more naturally yet, so you’re left with a Cortisol deficit. That is not good.
For me this meant brutal mood swings and just a general feeling of doom and depression. And anyone who suffers from depression knows that when you’re down you just want to live in an upstairs world. Wish everyone would go on and forget about you so you can lie there in that upstairs world and let it pass. Again, not a good place to be, especially if you have a new baby or anything remotely important to do. This depression usually came on about three days after I lowered my dose. You can take 5m or 2.5mg off each week depending on how much you’re on. It was bad so I started being religious with trying to counteract it.
The B vitamin helped. (B1,B5 and B12 all help to regulate Cortisol) I also stopped drinking coffee first thing in the morning and was advised to eat more protein instead by a naturopath. (Coffee elevates cortisol levels but doesn’t steady them. Protein is thought to slowly release cortisol). Eggs for breakfast every day and coffee only after food all helped to steady my mood when I was tapering off prednisone. No coffee probably better.
My course ran from November to the end of February. We were already looking at dialysis options in January as my bloods were showing function decline. Once it was decided dialysis was next I then had to taper for three months until May. In March my daughter was born.
Once the steroids were gone I felt a little lift. In July, I had the PD Dialysis tubes wrenched in.