Liver function on Riluzole

[Ellie]

Good to know, Gary.

[GaryM]

Just to add, since having the PEG done I've been prescribed some thickener and using thickened water has made a big improvement on the tablet taking.

[Ellie]

You know your body best GaryM so if taking Riluzole once a day suits you best, or not taking it at all, there's nothing wrong with that.

I take mine crushed, through my tube.

Love Ellie.

[matthew55]

I got Riz in liquid form, it's expensive so you have to mither.😉

[GaryM]

Thought I would just add that about a week before my PEG op, I was feeling very tired and lacking in appetite so I took the decision to reduce my Riluzole to one a day pending advice from the consultant. I was also struggling to swallow the evening tablet. I realise that may have been due to anxiety over the operation, but I've been surprised how different I've felt since. More energy and better appetite. I had another blood test in hospital last week and consultant advised to continue one per day and have another blood test around now. I'll probably try going back to two per day at some point, but wanted to share my thoughts.

[Ellie]

I’m going to use my energy for better things to think about.

For sure, Jeanette (especially if your eyes are white)

But it's also important to say, don't assume all ailments you may have are down to your MND. We are not immune from getting hammered by yet more conditions 😒 so we need to get things checked out.

Love Ellie.

[Heather R]

Jeanette I love your signature, and thanks for asking about signatures, I needed to know about them too x

[Jeanette Pearce]

Jeanette Pearce Are you jaundiced? I couldn't work it out, doh!! 😧

Love Ellie.

Thanks Ellie... May be I am ? May be I’m overreacting... I’ve had the blood tests and nothing has been mentioned so I’m not going to worry about it anymore. I’m going to use my energy for better things to think about. ❤️

[Jeanette Pearce]

Isn't yellowing of the whites of your eyes a better indication of jaundice?

Hi... my eyes are white so I’m probably overreacting - I should appreciate that my legs are tanned and not yellow... I’ve read all about MND and the signs to look for.
Note To Self:-
I need to stop worrying and just be grateful for my life and enjoy it instead of finding things to worry about ❤️

[Heather R]

Doug I love that, Cream is the new lettuce, great for a chuckle this forum (but Gary, hope the irritation is nothing to worry about) x

[GaryM]

Isn't yellowing of the whites of your eyes a better indication of jaundice?

[Ellie]

Jeanette Pearce Are you jaundiced? I couldn't work it out, doh!! 😧

Love Ellie.

[denise]

Now I looked it up and I couldn't see yellowing of the skin. Thanks for letting me know. I don't know, actually I'm pretty sure, stephen hasn't had blood tests for this. Thing is what do you do if there is a problem with taking the medication? Weighing up taking it or not?

[Jeanette Pearce]

denise
I notice my legs are tinted yellowish and I presumed jaundice
Anthony, my now husband of a month, said he thought it was as a result of my sun tan from the summer sun

[Ellie]

It's the Real World Evidence of Riluzole you're looking for. There are a few papers on it but this one sums it up: https://www.ncbi.nlm.nih.gov/pmc/art...dnnd-7-061.pdf