Riluzole

Hi, I've been on it now for two and a half years and have no side effects that I know if. I had the regular bloods taken and all has been well. I really do think it helps with everyday living. However one would never know for sure unless one stopped taking it and I am never going to risk it.

Hi Capri .. My friend is going into his 3rd month on Riuzole with no side effects and his bloods ( LFT and FBC ) are fine .. dvd

I delayed starting until my mother had been to stay in case I had side effects. It turned out I don't! Then I assumed the blood test would bring bad news. It didn't. So I seem to be fine taking it. It does seem really quick to have aching joints though. I would read the leaflet in the pack and see what it says about possible side effects. I assumed sickness and things rather than joint problems.

I had no idea there was a liquid form either but when I was given it I was told that if it gets hard to swallow it could be crushed and mixed with a teaspoon of yogurt and then taken quickly. A liquid form would definitely be easier though.

Luckily I can swallow it at the moment anyway. Good Luck with taking it Capri.

[Terry]

Hi Capri;

I would think that is too soon to have a reaction and would perhaps try it for a bit longer. But if you are concerned have a word with your GP and consider stopping it for two weeks and then try again.

I thought that the liquid Riluzole has been available for a couple of years.

Here are some details from Dude's link:-

ALS (Mnd) treatment now available in liquid formulation manufactures are Martindale Pharmaceuticals
Teglutik is a new liquid formulation of riluzole that can be prescribed to extend life or the time to mechanical ventilation for patients with amyotrophic lateral sclerosis.

Love Terry

http://www.mims.co.uk/als-treatment-...rticle/1373701

Hi GA I did hear it was going to be available in liquid, also Neuro said I could break tablet up. I may restart it again. Dude x

Dude apparently it has just been produced in liquid form, however my GP couldn't find it on her website. Ann

Hi Capri I stopped after 7 years. 2 reason, getting difficult to swallow and to see if it reduced napping - it didn't. Stick with it is my unmedical advice. Google side effects,. Dude.

hi dude I started it yesterday and feel awful all my joints hurt don't know ifits the cause, maybe! why did you stop please?

[Terry]

Rollators are great if you have a self service restaurant or to put drinks on whilst moving back to your seat. I have a plain old OT model but you're right, there are some very stylish models.

Love Terry

[Barry52]

Thanks Ann. All three of our children graduated. Our son conventionally via uni post school but the 2 girls did it the hard way whilst still working and raising family. My next challenge is to see the grandchildren graduate. Only another 8 years to keep going.

John,
The local MNDA branch paid for mine but the OT can apply on your behalf. I am very comfortable with the image as it is the Ferrari of rollators. 0-60 paces in about 10 minutes lol. Good luck with your application.

Barry

[John14]

I've memories of my daughter's graduation at Cambridge, after the ceremony we went for a meal and bumped into Rory McGrath who was very amusing. And to Sheffield for my son's graduation during a heat wave. That's were I met my wife, when we were both at Uni so many happy memories. Must look into a Rollator can you get them for nothing from OT or do you need to buy them on E Bay, are you comfortable with image?

At the moment I'm with a stick which I think looks quite distinguished somehow. Anyway happy days & congratulations!

Cheers,

John x

What a lovely day you must have had. Graduation Days are one proud moment for us parents and how nice to have a front row seat. Congratulations all round. Ann

[Barry52]

I was glad of my rollator yesterday at our daughter's graduation ceremony. There was a lot of hanging around but I had my mobile seat and it also secured us front row seats.

Barry

[Terry]

Hi Jay;

A rollator is generally better than a zimmer but does need a bit more room. Not all Mnd people lose the ability to walk but most do.

Love Terry

Cat naps are good JT. Have you considered a rollator with seat on. They are good cos you can sit down when you get tired like waiting for a bus etc. Have you got, or planned for when you can't walk, downstairs wetroom & bedroom. Dude