Chronic lymphocytic leukaemia (CLL) Pure Red Cell Aplasia (PRCA) - one man's journey (Part 15) - the run down!

I've not said much about my on-going treatment recently; basically because it's been just that, on-going.

I'm settled into a routine of taking my Ciclosporin and Exjade (Deferasirox) and accepting that I'm immunosuppressed and didn't ought to mix much with people. Both Ciclosporin and Exjade can have a detrimental effect on my kidneys so we had to get the dose right on both drugs. If you remember the Ciclosporin is helping to combat my Pure Red Cell Aplasia (PRCA) and ensure I don't kill of my red blood cells and the Exjade is countering the effects of too many blood transfusions last year which left me with too much iron in my bloodstream.

Back in September last year I finally came out of the "red" on my HB level when it reached the dizzy heights of 134 and it has since been as high as 141 which, when you remember it had been as low as ~55, feels reassuringly good.  

I completed my course of steroids in January 2023 and at the same time stopped taking cotrimoxazole which is a antibiotic buffer given to prevent certain chest infections (although recently the doctor suggested the evidence supporting its use wasn't that hot).

Things proceeded fine through February until I began to realise that I had really sore gums especially in the area of my wisdom teeth. This got progressively worse to the point that I could no longer eat solid food. Now while this is generally good for dieting, and the stoic in me thought I could survive on yoghurt and soup indefinitely, I decided I'd better see my dentist. At the same time I was also consulting with my nurse practitioner and they finally spotted that a side effect of Ciclosporin can be to trigger gingival hyperplasia - swollen gums. Luckily we were able to reduce the Ciclosporin dose in the evening and this brought things back under control. This also helped my kidneys which weren't enjoying the double hit from Exjade and Ciclosporin at the time.

April and May were steady as you go months although as my consultant said we had already in effect started the Ciclosporin run down to address the gingival hyperplasia. At my end of June consultation I was told that any further run down would need to be sanctioned by Kings (which can take an age) but was pleasantly surprised to get a call the next day to say Kings had come back straight away to confirm I could drop my evening dose by half. That was great news. There would be a six week trial period with a blood test to check progress at the 3 week point. (Thanks to the Newent phlebotomists for fitting me in at short notice).

The 3 week test proved interesting because everything was fine with my levels except for the fact that I was suddenly showing up as badly neutropenic again. Neutropenia is a condition where you have a low number of white blood cells (called neutrophils) in your blood. When you have low levels of neutrophils in your blood, your immune system is weakened, making it harder for your body to fight infection. This is called neutropenia or being neutropenic. There was no obvious explanation for this sudden occurrence, but when I happened to mention I'd had my Covid booster jab three weeks earlier there was a few knowing looks down the telephone and we agreed that we'd monitor the situation for another three weeks. That sounds a bit flippant, but obviously there is always the caveat that if a blood cancer patient feels unwell they must phone the helpline.

Coming right up to date the second three period has been completed and all levels are back to normal so all's well that ends well. I'm to further reduce the Ciclosporin dose and we will see where we are in another 8 to 12 weeks.

Good old NHS.