Fingolimod and Liver
Hello, hope everyone is well. I am 23 and have been on fingolimod for around 6 years now. I’ve been to see my GP recently and found out that i have postural hypotension as well as high liver enzymes. Just wondering if anyone has experienced similar symptoms on Fingolimod? I am quite worried and nervous now as I have also been experiencing quite a lot of dizziness and nausea and constantly feel like I am going to faint. This is quite concerning to me as (thankfully) my MS has been quite quiet since I have been diagnosed and my health overall is usually quite good. Has anyone had to come off their medication due to high liver enzymes? And did anyone experience serious liver damage - potentially needing a liver transplant? I am quite social so do enjoy going out for drinks, however since finding this out I have completely cut out alcohol. I am looking forward to hearing other people’s experiences and thank you in advance to those who are willing to share.
@lukrug I've been on Fingolimod for about 10 years. I thought high liver enzymes were a side effect of the drug, and yes mine are high. However, as I am regularly monitored by my MS healthcare team, I assume that if there is a problem, they will do something about it. If in doubt, speak to your MS healthcare team. They should be able to advise you, and good luck with the other problems. I was on a clinical trial for ozanimod (not available in England & Wales) and during the trial I was sent a liver specialist, who informed me that he wasn't concerned about my liver, as the clinical trial team were worried about my high enzymes. He also suggested I continued taking my cod liver oil capsules as he considered this to be one of the better supplements for us to take. I had hepatitis as a child, so I was concerned that this may have damaged my liver and may have had some impact on the liver enzymes readings.
@AndreaG Thank you so much for your reply. I have contacted my MS nurse to discuss this. Also, I never knew about cod liver oil, will definitely consider taking this now. I only take vitamin D now. Thanks again for your reply, it’s really reassuring to hear someone else’s experience.