Has anyone who has received Lemtrada had high creatinine results? I began Lemtrada Feb 2016 and have had my standard 2 infusions (2016, 2017, awaiting decision on whether I require any further for 2018) but now my monitoring results showed high creatinine (increasingly slowly but steadily for last 5 months) and they are considering running more tests to see if I could have kidney disease.
Has anyone experienced this, and if so, what was the future treatment like? I’m assuming that if it’s decided my kidneys are OK they’ll just be monitoring my monthly results extra closely from now on. However, if I do have kidney disease, I am struggling to see clear information about what the treatment is and the progression path could be and as normal, my Nurse is trying to keep me from worrying so telling me to wait for results, my GP is clueless and my Consultant isn’t available on the phone.
I’m a planner, so I get lot of comfort from being able to plan, but I am a bit lost with this one. Also, really irritated – I had come to terms with probably getting a thyroid issue at some stage and decided that was fine because my MS was quite aggressive and there are thyroid drugs, but this came out of nowhere 🙁
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