Liver function on Riluzole

[nunhead_man]

Good afternoon,

Yes I do think it is worth persevering - There seems to be some work being done that suggest that riluzole is actually more effective than it was originally thought to be in its clinical trial - I'd post the reference but I can't seem to find it at the moment

[GaryM]

nunhead_man Hi Andy. Yes, I'd seen that. I think it was something to do with the research study having a short time span so they couldn't wait until everyone's life span was known.

[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

[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

[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?

[Ellie]

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

Love Ellie.

[GaryM]

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

[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

[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 ❤️

[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. ❤️

[Heather R]

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

[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.

[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.

[matthew55]

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

[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.