maryjane 27/10/17
Last reply 1 week ago
pericardial effusion

Has anyone that is on Lemtrada, had pericardial effusion (fluid around the heart). I had a CAT scan looking for kidney stones and was surprised when the doctor’s office called to tell me I have fluid around my heart. I didn’t see anything online saying this was a side effect of Lemtrada. I left a message for my MS nurse, but haven’t received a call back yet. I was just wondering if anyone has any experience with this.

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stumbler
7 months ago

@maryjane , I’m not sure your MS Nurse will be able to help with this condition.

It seems that Pericardial Effusion can be asymptomatic, i.e. presenting no symptoms, and can have various causes. So, it’s fortunate that it’s been noticed during an examination for another condition.

This may have been a pre-existing condition prior to your Lemtrada infusions. As I can find little information of Lemtrada causing this. But, would anyone be specifically looking for this condition?


bok2bjan
7 months ago

@maryjane – I’m not on Lemtrada, and don’t know anything about the side effects. But assuming this is unrelated – the fact that you were asymptomatic, probably means the fluid accumulated slowly. It can easily progress to tamponade if it accumulates rapidly, or is a very large amount of fluid. It is treated largely based on the amount of fluid, and the underlying cause. I hate surprises like that! So – did you have kidney stones? Are you following up with a cardiologist? Jan


maryjane
6 months ago

I do have some symptoms but I thought they were caused by something else. I’ve had a kidney stone in my left kidney for years. It just hangs out. The chest pain started during my Lemtrada infusions. It happened last year but wasn’t as painful or last as long. I don’t know if that pain is related. I read that pericardial effusion can be caused by chemo and hypothyroidism. I’ll have to follow up with my doctor and get my thyroid checked because I do have hypothyroidism. I also have an appointment for an echocaridogram in early November.

The nurse practitioner at my neuro’s office said she wanted my medical records as she is reporting this to Genzyme. And my MS nurse through MS One to One has reported it to their safety team.

When I was told something was wrong with my heart, I totally forgot to ask about the kidney stones.


bok2bjan
6 months ago

@maryjane – I can totally relate! I found out I had MS when they were checking something else. And I do have something wrong with my heart – and it is just different. It’s so central to life! I do think the symptoms could have been due to the stress of the infusion. Maybe you had a predisposition for fluid to form – but the infusion made it worse? Who knows. But glad you’re getting an echo. They’re easy – I’ve had at least 50, lol. No matter how strange a test you could think of – I’ve had it. Sometimes I think they’re just using me to train doctors!!! Sounds like your kidney stone is manageable for now. That’s good. Keep us posted – Blessings, Jan


maryjane
1 week ago

My heart checked out fine so the cardiologist figures it was an infection. At the same time I kept having a low grade fever, so an infection makes sense. A bit of a scare when you think there is something wrong with your heart. Great relief to find out my heart is perfectly fine.

Thank you to all.


stumbler
1 week ago

@maryjane , it’s nice to have some good news when your body is causing problems.

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