dogsmakeitbetter 31/01/18
Last reply 5 months ago
Lemtrada and kidney disease?

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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stumbler
5 months ago

@dogsmakeitbetter , I’ve never heard of this before, but that doesn’t surprise me as I’m not medical.

I looked this up, as you do, and found this webpage :-

https://www.wikihow.com/Bring-Down-High-Creatinine-Levels

It goes on to say that one cause of high creatinine levels is :-

“Hypothyroidism: Having a dysfunction in your thyroid gland can have an influence on your kidney function. Hypothyroidism can decrease your kidneys’ ability to properly filter waste out of your body.”

which stuck out a bit for me…….

There’s also some advice here:-

https://www.healthline.com/health/how-to-lower-creatinine

although check any plans out with your MS Nurse first.


petal87
5 months ago

Hi @dogsmakeitbetter

I have had the same experience, due to be having round 2 next month. I’ve been refered to see a renal conuslant and on the basis of that my neuro is going to look at the possibility of switching treatments. I was examined for signs of kidney failure (I have no symptoms at all!) and I am continuing with monthly bloods and urine. Consultant has told me he isn’t too worried about it – but it should be looked at by renal to make sure. It’s SOOO frustrating- so I am feeling your pain and sending lots of sympathy. I too am a planner and I like to know my options. Maybe keep in touch with your nurse for updates and ask if a referral is needed? The message I’m getting is that there can be these anomalous results which maybe mean everything is fine – however, best to look into. X


dogsmakeitbetter
5 months ago

Thanks so much @stumbler that’s really kind of you to look up too – and interesting about the link to hypothyroidism that would make so much sense!

@petal87 I know so frustrating!! I would like to be looked over by renal too but nurse thinks it’s fine as my latest blood test says I’m ok. Odd, seeing as so many results showed steady, sustained increase. Worried the good result is the anomaly as everything says kidney disease needs fast action. Will see what Feb tests say and take it from there! Good luck for your round 2 if you go ahead with it, I remember it very clearly as I wasn’t on my own getting treatment that time and the other lady was doing round 1 – reminded me of how far I’d come and was really good to get some perspective! Also so much easier when you know what’s coming, and dunno about you but my wardrobe choices were a bit different (ALL modal cotton) and lots of baby oil made it so much easier to handle the rashes! Best of luck with your next move 🙂

Thank you both so much, good not to feel a little crazy xoxo

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