I finished week 32 today!
At the last lot of blood tests (Monday this week), my eGFR (estimated glomerular filtration rate), which approximates kidney function, was down one point down to 73, from 74 two weeks ago. Normal is above 90, and for the first few months of treatment, it didn't drop below 88, then suddenly it dropped to 76, 74, 73. It seems to have stabilised, so no crisis, I think.
I asked the nurse about it at the hospital. I wasn't all that convinced by her answer, but I don't think that the research has been done. She said that it was because the ribavirin had built up to such a level that my body was having trouble clearing it, and that if I had a normal liver it would clear it no problems, but because of my liver condition it can't cope with the amount of ribavirin. Well that sounds like nonsense to me since my liver had very little damage before I started treatment, my liver enzymes have shown as normal ever since I started treatment, and at an appointment I had with an osteopath a couple of weeks ago he said my liver was not inflamed at all, after giving it a good squish. And also, because in the study I found they said kidney impairment had not been a problem with dual therapy - it was a new issue with the triple therapy - so it must be something to do with the boceprevir, not just the ribavirin. So... But the bit I trusted was that she said that in their experience, they can address it by reducing someone's ribavirin dose, which I'd be fine with if it's necessary, as I'm still on 1000mg.
She said it wasn't damaging my kidneys. But I wonder how they know? From the research I found online, kidney problems were not noted as a side effect to the boceprevir or telaprevir during the trial phase, but have been found to be a side effect now that the drugs are being used. Because it wasn't noted as a side-effect during the trials it hasn't been fully investigated and they don't have much data on it. But in the study abstract (http://www.ncbi.nlm.nih.gov/pubmed/23813604) it says that there were instances of kidney failure in the French early access program. Another thing is that it's pretty difficult to tell how damaged kidneys are from general blood tests, they normally work well until they are really quite damaged and then the function drops off quite sharply (this is my understanding - I'm not a doctor); they don't heal like livers do either.
You are going to think that I'm mad, but there's another thing that could be skewing the blood test results. eGFR, the test they use, measures the amount of creatinine in the blood. My understanding (based on wikipedia) is that creatinine is released at a fairly standard rate as a natural bi-product of normal muscle processes, creatinine is a breakdown product of creatine phosphate, which is found in muscle. So they can estimate how well your kidneys are filtering and clearing toxins by the amount of creatinine in your blood. But the calculation isn't accurate for people who have unusual muscle mass for their height, weight, age and gender - the examples given are because they are missing a limb or are suffering from a muscle wasting disease - and this is where you are going to think I'm mad; I've been doing weights a couple of times a week, the whole point of which is to cause muscle damage (by over stressing the muscle a bit) to stimulate muscle growth - so that will mean I've got more creatinine in my blood than would be expected. I asked the nurse about this. She said it "shouldn't have an impact", I think maybe she just wasn't really thinking about it in that way or prepared for the question. My eGFR results started to drop almost exactly when I started doing more weights...
Anyway - I can't do much except be as kind on my kidneys as I can be, and if it gets any worse they can address it by reducing my ribavirin dose.
So I am instigating "Operation Kidney Assist" - (I know, silly and overblown, but I find it easier to over-engage). This means:
- no vitamins or any unnecessary pills
- body brushing on my four weekly non-work days (I can't get up in time on work days)
- having hot water with a slice of lemon in first thing in the morning on non-work days
- having asparagus at least once a week
- drinking even more water, at least 3L a day
- trying to avoid sugar.
I have more blood tests in two weeks time, so I'll keep it up until then and see how it goes.
The hospital got my prescription wrong again - they hadn't prescribed me any Boceprevir, forgetting that I was a prior non-responder so should be prescribed it until week 48. It doesn't fill one with confidence. I was so tempted not to say anything - it would be lovely to stop taking them. I'm on the full dose for the duration though. Am going to do everything I can!
