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Mollymolly
1st November 2013, 21:15
Good evening all.
I wondered if you could offer me advice. My dad is still in the process of being diagnosed with MND / MNd type illness (although I thought there was no such thing as 'type'?)
EMG showed it was more upper neurone like PLS, although he has other symptoms which is puzzling the neuro team.
They have given him a riluzole prescription, but we are wary about taking meds if they are not definitely going to help ( my father was on statins pre illness - say no more)
Can you offer advice on riluzole? Is it worth it? Does it help with symptoms?

Thanks a lot
X

pete
1st November 2013, 21:40
Hi,

Well it was expensive and not given without good reason, still being the only drug known to do anything positive, as for if it works that very much depends on if you can take it without any complications because you are monitored initially, for me it has not been any trouble so I still take it, many chose not to take it because it only ever promised a delay of months to ventilator being required ,then again we are all very different so it is again a matter of luck, so as I still survive after a while longer than they predicted , and was it Riluzole that has worked for me ,I honestly have no idea but whatever has given me more time is I believe is more to do with being positive and never giving up until you have no choice in the matter.

Pete

Terry
1st November 2013, 21:47
Hi Molly;

If you put Riluzole in the search box on top right of this page and then look at the thread called "Taking Riluzole or Not?". I hope that you can do this but if not please ask for help and I will PM you.

I agree totally with Pete on this occasion.

Regards

Mollymolly
1st November 2013, 21:52
Thanks terry and pete. I will take a look now.
The neuro said he needed his liver checked weekly which worried us -but will weigh up the pros and cons.
X

Frank
2nd November 2013, 00:54
Hi Molly.
It's a personal opinion, but I only see riluzole as a 'pro'.
Your dad will be monitored and any problems will be picked up.
Any extension of time must be a positive contribution to your family and friends.
I sometimes think it is our 'mind set' of modern life that we think of all disease having a cure and then wondering about the possible effects on later life of all the meds we take.
The hard part is getting our heads around the fact that we won't have that 'later life'.
I hope this doesn't come across as insensitive, as I don't mean it to be.

It's just the way we are conditioned to think these days.
Sorry for waffling on, but I do see riluzole as a good thing, even if it's just as a positive placebo.
xx Frank.

Mollymolly
2nd November 2013, 09:51
Thanks Frank, I have told him to take it. I'm guessing its ok to take with all of his supplements I have been bombarding him with - curcumin, coconut oil etc etc.
Not insensitive at all, appreciate the honesty - however, I still have hope. There will be a cure one day, why not with us :)
Thanks again x

Terry
3rd November 2013, 21:36
Hi Molly;

Liver and Kidney tests are not normally done every week, to start with they might be monthly or three monthly and after a few that might well be extended further.

Best Wishes Terry

wsbarker
15th January 2014, 16:17
Hi
My husband was diagnosed 5 years ago. He started taking Riluzole. I don't believe that it slowed things down or helped with symptoms. We were seeing Prof. Talbot and Dr Turner at John Radcliffe in Oxford, all of their research is in MND, they didn't 'guarantee' that the Riluzole would slow it down or help with symptoms. God bless you x

Terry
15th January 2014, 16:34
Hi;

Riluzole does not do what we want it to but I believe that it does a little good as the trials show. I don't think that the NHS would pay 12 per tablet (A year ago) for a placebo.

Regards Terry

Pedr0
24th January 2014, 22:40
Hi,
I was diagnosed with ALS 19 months ago, within a month I was on Riluzole, I had the blood test after one month and then again a year later. Luckily I had no noticable side effects and like everyone I guess, we are taking Riluzole just in case it helps increase quality of life months.
From a couple of months after diagnosis I have used a ventilator at night to reduce CO2 levels they still keep me on the Riluzole which I find odd if it only helps delay the use of a ventilator.
Regards
Peter

ccvsd
25th January 2014, 10:30
Agree with Frank and Mollymolly.

If someone is suspected of having MND, there is potentially more to lose by not trying riluzole to slow it's progression. If your dad were to live for 5 more years, he May get another 6 months on this earth to spend with family.

This gives a little more time to benefit from a cure or other advancements in treatment.

I haven't noticed any slowing of progression with Rilutek, but hubby points out that studies show a 10% slowing. So it will take 11 days to make the same progression as you normally would se in 10 days. It is very unlikely that anyone would notice that difference.

I wondered about the post-ventilator use of Riluzole too. I was told it was for pre-ventilator too. I wondered if it was to emphasise when the benefit is greatest but it should still be able to slow symptom development all the way through the disease.

Glad you are giving it a go and I hope he gets on Ok with it.

Caroline
x

pete
25th January 2014, 21:11
Hi Pedro,

from the countless visits to the QE visiting my Prof, who I might add treats you like a human being instead of a pile of notes within a folder ,I asked several times about the Benefits of taking the one and only proved drug so far, she admitted that it was mainly beneficial for bulbar presentation patients !because of the quicker progression rates associated with that form! despite the odd patient suffering adverse affects overall it has been seen in the data collected from us lab rats over the time since 1996 that's I think when it was first approved for ALS , it comes from the same grouping as Dextromorphen that drug also seems to give some help with swallowing problems associated with bulbar . Having now been on it since 2009 with no adverse affects and still in the land of the living ,I can say it hasn't done me any harm, then again I have no way of knowing that it has benefitted me ,so No reason to not continue with it and keep fingers crossed that all this data they collect from us is proving worthwhile . So far it hasn't provided a treatment or any signs of a cure.

Pete

Pedr0
28th January 2014, 18:08
Hi Pete,
I totally agree with your comments, I agreed to taking riluzole on the basis that if it slows progression by any amount then it is worth taking.

Regards
Pedro

Caroline Harkness
31st January 2014, 22:51
hey My dad was on riluzole for a few months but hes now stopped it coz he got alot of side effects very tired more, muscles spasming alot more really weak dry skin depression. happy one minute the next upset, he stopped theses and hasnt been as bad but everyone is different in taking side effect

Caroline

Terry
1st February 2014, 17:00
Hi Caroline;

It is interesting that you think that not taking Riluzole has improved things. My skin has been dry and I have exaggerated emotions.

Has anyone else stopped taking it and noticed any improvements.

Regards Terry

Caroline Harkness
5th February 2014, 10:51
Hi Caroline;

It is interesting that you think that not taking Riluzole has improved things. My skin has been dry and I have exaggerated emotions.

Has anyone else stopped taking it and noticed any improvements.


Regards Terry


Heya Terry

Dad has had way too much side effects, plus is putting more chemicals into your body going til help or make you worse.. Yes I for one would drink rat poison if it was til make ya better but ya got til way up things like drugs dad had taken statins etc and what has happened after theses drugs, always think now it's down til what drug company's food company's etc r putting into everything just til make more money and don't care about people's health it's a sad world , all about greed now days :-(.

Caroline

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