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View Full Version : Newly Diagnosed and offered Riluzole and possibly Retrovirals



paul.williams
17th November 2014, 14:22
Hi,

I have just been diagnosed with MND and although my symptoms are very mild at the moment (lack of grip in hand and muscle wastage in the hand and also muscle twitches all over) my consultant has offered me Riluzole. I guess I should take it and judge from the side effects whether it is worth continuing with.

My real question is to do with Anti-retrovirus medication. My consultant mentioned that some HIV medications have shown to help with some MND cases. I have not been able to find much on-line (or in this forum) about this but wonder if anyone else has researched or is trying this sort of medication.

This is the start of my journey and I am feeling a little alone (although well supported by my family, friends and colleagues). I guess it will take a little time to get used to the new me and setlling in to my new support network!

Thanks you friends.

Paul

Night walker
17th November 2014, 14:35
Hi
Firstly glad you found this forum, it's priceless. Secondly, so sorry you have been diagnosed. What type do you have if you know that yet?

Can't comment on the HIV meds helping and there are those on this forum better informed than I am might know.
My hubby was on Riluzole but got taken off due to adverse liver function test results last month.

He went off coffee and his pint of bitter. He is due for another liver function test soon. I am not sure if he will go back on them if offered.
Other than that I do not think he had any other side effects, unless stubbornness can be attributed to the drug in which case he still shows those effects by the sack load.

I am very interested in any info on the HIv treatment being used for MND.

Cheers

Trevorhb
17th November 2014, 15:29
I have been taking Riluzole for some months now with no apparent side effects. It is supposed to extend life, so as there is nothing else, it is better to take it.

pete
17th November 2014, 16:44
Hello Paul,

Welcome to the forum, Riluzole is more or less standard drug given to all mnd patients, for some it's supposed to protect the neurons and delay the need for trach surgery ,it's questionable as to if it helps or not, as most neurologists admit they don't fully understand why or if it works,mainly due to there being no way of predicting how we will progress as we all seem to have varying rates, they can't say for certain that it will work for everyone add to that many cant take it ,because of existing problems with liver or kidneys, I have taken it for six years with no ill effects ,so very much up to you if you do,most who can try it.
Havnt heard of any HIV drugs being tried in mnd patients ,though it wouldn't come as surprise ,as there is nothing else.

Terry
17th November 2014, 16:48
Hi Paul;

You must find it very hard being newly diagnosed, I know I did. Welcome to the forum and you should find lots of help here. If you have the name of any drug you can put it's name in the search box at the top right of this page.

Best wishes, Terry

willsandco
17th November 2014, 16:52
I have gone on Riluzole twice now and come off it both times because I got so exhausted and my family said I was getting like a zombie. I don't know now if it was the drug or just the general exhaustion that can accompany MND I am off it now, back to being a live wire again. So it doesn't suit everyone. It is definitely worth trying though, I think. Let us know how you get on!

paul.williams
17th November 2014, 17:20
Thanks guys. As I said, I am at the beginning of my journey so I will let you know how i get on as tings progress. I am fighting to get appointments at the moment so that I can get things moving. It is a pain when you are offered the next appointment in 4 months time!

Jock
17th November 2014, 19:16
Here in Bangor Paul it's three months between Neurologist visits.

I'm on Vitamin D3 instead of Riluzole even though the later is free to me in Wales. Hand on my heart I couldn't tell you which buys more time.

njm
17th November 2014, 19:32
Hi Paul,

I am intrigued about the anti-retrovirals suggestion. Is your consultant an MND specialist or a neurologist? My husband sees Prof Shaw at the Kings MND Centre in London but nobody there has mentioned anti-retrovirals to us.

Andrew - could you enquire from the Research team at MNDA if they have any further information about this please?

Sueb
17th November 2014, 20:19
Sorry you have to be here Paul. Everyone is very helpful and supportive here.

Steve goes every three months to QMC in Nottingham. He has been taking Riluzole since he was diagnosed in July with no side affects. He has a blood test every month.

Sue

fishmate12
20th November 2014, 01:57
Hi Paul,

I notice you showing some interest in supplements, but i avoid chit-chat on threads,
and try to keep it serious, for those who might genuinely want to help themselves,
As you're new to MND issues,..you're likely to take your Neuro's advice,..and take Rilutek.
We all have commitments, so work's important,..but ask anyone with MND,...and health comes first, period.

If you were serious about supplements, you would keep the tv off for an hour, and take all the info in,
there's many hours of my time posted,..for other folk's benefit,..so i'm not inclined to reiterate it because
someone can't be bothered taking it all in,..there's also sound advice on the Placebo, Rilutek.
it's your health, do you want to trust someone not Medically qualified,..and one short of a six-pack?

You appear to have an amazing GP,..you've got an "iffy" hand,..and he refers you to Neurology,.
no suspicion of other ailments,...it's amazing you've been "labeled" with MND,..due to your hand only,.
i would suspect most folk show lots more outstanding issues,..for Neuro's to instigate various tests,
I had two EMG'S, Lumber, MRI,..as most folk,...yet they saw fit to put you through all that, it's surprising
going ahead with all these tests,..just for symptoms in one hand, but that's MND, no two are alike.

My last post to Anne,..advises folk what to try,..and you've heard of Ebay!!

Good luck,
Ray

mik
20th November 2014, 23:23
Hi Paul,

I notice you showing some interest in supplements, but i avoid chit-chat on threads,
and try to keep it serious, for those who might genuinely want to help themselves,
As you're new to MND issues,..you're likely to take your Neuro's advice,..and take Rilutek.
We all have commitments, so work's important,..but ask anyone with MND,...and health comes first, period.

If you were serious about supplements, you would keep the tv off for an hour, and take all the info in,
there's many hours of my time posted,..for other folk's benefit,..so i'm not inclined to reiterate it because
someone can't be bothered taking it all in,..there's also sound advice on the Placebo, Rilutek.
it's your health, do you want to trust someone not Medically qualified,..and one short of a six-pack?

You appear to have an amazing GP,..you've got an "iffy" hand,..and he refers you to Neurology,.
no suspicion of other ailments,...it's amazing you've been "labeled" with MND,..due to your hand only,.
i would suspect most folk show lots more outstanding issues,..for Neuro's to instigate various tests,
I had two EMG'S, Lumber, MRI,..as most folk,...yet they saw fit to put you through all that, it's surprising
going ahead with all these tests,..just for symptoms in one hand, but that's MND, no two are alike.

My last post to Anne,..advises folk what to try,..and you've heard of Ebay!!

Good luck,
Ray

hi,
would like to point out that i was reffered to my neuro with just cramps in my hand. theres no need to reply to the him with such a bad attitude. were all here for the same reason.
mik

Ellie
21st November 2014, 13:14
+1 Mik.

Hi Paul,
I was also referred to a neurologist by my GP, for weakness in one hand. There was absolutely no suggestion of MND at that stage, but it is the role of the GP to refer patients to specialists if they don’t know what is wrong with them.
I’m sorry that I’ve got nothing to say on the question of anti-retrovirals; there was some work done in the 1990s, but don’t know of much since. I've taken Riluzole since diagnosis.
Take care,
Ellie.

Jan
21st November 2014, 13:34
I was referred because of suspected drop foot and after a few bad falls whilst running, never in my mind did the thought of MND come into things, at worst I thought I had damaged something in my back/neck whilst running. I am considering Riluzole but doubt I will take it; I am not good at taking anything, even a paracetamol!

paul.williams
21st November 2014, 17:14
Thanks guys for all your input.
We are all here for the same reason and our journeys have taken many different paths to get here. I am now inspired to do more research and take charge of my own destiny.
I (like you Jan) thought I had injured my neck when running. Even managed to do the Great North Run in Sept. So still running (while I can).
I am seeing my consultant on Monday so will update you on the ant-retrovirals suggestion.
Have a good weekend everyone.
Paul

marieline
22nd November 2014, 04:20
Hello Paul,
Riluzole is a choice, it is not compulsory, some of us do not take it, we intend look at ways we can support our nervous system. It was offered to me once and was never brought up again. As you say do your research and then decide. Perhaps running might not be the best thing for your muscles right now, time to perhaps slow the pace.
A few of recently diagnosed cases here in Australia are famous sports men and there seemed to be a link somewhere in there. Please do not take my words for it, do your own research. Slowing down will be a wise move for all of us who once lived a 100 miles an hour, me included. i often wonder about that myself.
Best wishes
Marieline

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