Riluzole

[Lynne K]

Betty May thanks xx

[Betty May]

Lynne K

That's good Lynne.

Just wanted to send you best wishes for everything you've got on this week. xx

[Lynne K]

My liquid Riluzole has eventually arrived, what a relief xx

[LesleyB]

I never questioned taking Riluzole. Started taking it Jan 2021. Bad headaches for a week or so and perhaps a bit tired. But after that fine. After my diagnosis a year ago I just went along with it

[Ellie]

I have regular order of kefir and live yoghurt in my shopping

👍👍
Mine go down the feeding tube xx

[Rosemary6NT]

That explains why I have become windy recently.

😄 glad I’m not the only one lol 😉

[Rosemary6NT]

You can blame your flatulence on Riluzole for sure Rosemary, increased gas is a known side effect, though not very common - that's your 'get out of jail free' card 😉

I don't know if you're into taking supplements but, if you are, then no harm in supporting that gut flora with kefir, live yoghurt and/or a good probiotic. xx

I have regular order of kefir and live yoghurt in my shopping 🤗 xx

[keno]

You can blame your flatulence on Riluzole for sure Rosemary, increased gas is a known side effect, though not very common - that's your 'get out of jail free' card 😉

I don't know if you're into taking supplements but, if you are, then no harm in supporting that gut flora with kefir, live yoghurt and/or a good probiotic. xx

That explains why I have become windy recently.

[Ellie]

Perhaps if too much Riluzole is getting into my large intestine it could be playing havoc with my gut flora lol.

You can blame your flatulence on Riluzole for sure Rosemary, increased gas is a known side effect, though not very common - that's your 'get out of jail free' card 😉

I don't know if you're into taking supplements but, if you are, then no harm in supporting that gut flora with kefir, live yoghurt and/or a good probiotic. xx

[Rosemary6NT]

Rosemary6NT To give you the reason why it's best to take Riluzole on an empty stomach, "high fat meals" can reduce the window of time for absorption by 20%, and can decrease the maximum amount of, and extent of, drug absorption by a whopping 45%.

What constitutes a "high fat meal" isn't defined, but we should take from that data that it's best to take Riluzole on an empty stomach where possible or, if eating something light prevents nausea, keep food as low fat as possible. xx

We’ll that’s interesting, thanks Ellie. I will change my routine accordingly. Perhaps if too much Riluzole is getting into my large intestine it could be playing havoc with my gut flora lol.

[Lynne K]

I had a message from my GP to say that he’s sent my prescription request to my designated pharmacy and to allow 48 hours for delivery xx

[Ellie]

Rosemary6NT To give you the reason why it's best to take Riluzole on an empty stomach, "high fat meals" can reduce the window of time for absorption by 20%, and can decrease the maximum amount of, and extent of, drug absorption by a whopping 45%.

What constitutes a "high fat meal" isn't defined, but we should take from that data that it's best to take Riluzole on an empty stomach where possible or, if eating something light prevents nausea, keep food as low fat as possible. xx

[Rosemary6NT]

[USER="26919"] it's the fat which reduces its absorption, rather than 'food'. xx

Oh, I didn’t know that. I take mine twice a day with moderately fatty meals …🤔

[Betty May]

My husband was keen to try Riluzole - he wanted as much life as possible - but he found it made him tired and nauseous, and because he was struggling to work anyway he soon stopped it. I had hoped that he would re-start it later when he was no longer working, but he was keen to be on the MND Smart trial and his energy levels were already very low so he felt that getting his body used to Riluzole as well was too much.

Early on in the disease I remember thinking that three months wasn't much. I was wrong - every day is precious. But hubby didn't feel he could tolerate it and the pay-off would not have been worth it for him. He achieved an amazing amount in his short time with this illness and was nearly always cheerful and hopeful and made the most of each day.

[Tabbycat]

Ellie Thank you, that's very helpful. I tried to find information as to whether the 'taking on an empty stomach' was to prevent nausea or if it was related to absorption but had been unsuccessful.