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jadedjohn
9th December 2010, 21:42
hi all

i have just started taking Rilutek, with no real side effects, has anyone noticed any benefit of taking this drug. i have read that combining it with 3000-5000Mg of Vitamin E, and a dose of Coenzyme Q10 increased the benefits.

is anyone else, trying other things to prolong thier life?

at the end of the day, what have we got to lose!

John

mik
10th December 2010, 11:20
mik is also taking rilutek and has had no side effects he takes vitamins E and B also magnesium and a multivitamin but hasnt noticed any sugnificant changes with the vitamin E its a lower dosage n he only takes 1 tablet everyday

jadedjohn
10th December 2010, 17:43
thanks, Im taking what i said above, it would be good if other people shared thier view on here - one thing i found on the international ALS forum was one lady who was taking large does of Vit E and Q10 with rilutek and noticed an improvement in her muscle tone.

computatec
11th December 2010, 16:06
I am also taking supplements in addition to Rilutek in the hope of slowing down the progression of the disease. I am taking Vit B50 Complex one per day, Vit E=400 one per day and Ubiquinol which is the reduced form of Coenzyme Q10 produced in Japan by Kanaka. I take one 100mg capsule per day. CoQ10 is normaly available as Ubiqionone which has to be broken down in the body before it can be absorbed, but Ubiqinol is in ready assimilable form.

I don't think these supplements are doing anything at all to slow down the progress of my MND, but they probably help me feel a bit better. The difficulty we have is that there is a protective barrier between our brain and spinal cord and the rest of our body which is know as the Blood Brain Barrier (BBB). This barrier prevents drugs and supplements we take from being delivered to the seat of the disease, which is in the brain.

As this is a most interesting problem I am proposing to start a new thread on the Blood Brain Barrier.

Countyboy
13th December 2010, 17:51
Hi Everyone, Whereas I do not wish to put a damper on the good that vitamins may or may not do I feel it is my duty to say that many on the Build- UK forum have over many years tried them, and found they do nothing to extend life. The conclusion of some was that they were a waste of money.
Best Wishes,
CB.

sarahezekiel
13th December 2010, 18:42
I took Rilutek and most of the supplements mentioned above. Rilutek gave me diarrhoea so I had to stop. I think that everything's worth a try but I didn't have any success. My MND seemed to slow down when I stopped worrying about it.

Countyboy
13th December 2010, 20:17
Hi Sarah, My attitude from the very beginning was to keep my brain fully occupied and not to have time to worry about my MND. It has worked for me and I think many others would do better if they adopted the same way of thinking.
All the Best,
CB.

jadedjohn
13th December 2010, 20:39
CB - taking extra vitamins etc may be a "waste of money" but as you say, you could be eating smarties, but if you believe they are doing you some good, the power of your mind will help im sure.

also have you seen this. http://members.tadaust.org.au/shakel/introduction.htm

John

mik
13th December 2010, 22:01
hi sarah was just wondering if you noticed any difference in the symptoms of mnd when you stopped taking rilutek? my partner has just started getting a bad stomach and acid reflux he has only been taking rilutek since feb! he really dont want to come off it but any feed back would be greatly appriciated thanks jodie

sarahezekiel
14th December 2010, 16:30
Hi Jodie

I think my symptoms improved when I stopped taking Rilutek. They certainly didn't worsen and I felt better generally. Are you sure that the Rilutek is causing the stomach problem? My neurologist told me that it was OK to stop and start Rilutek, which I tried before giving up. Can you speak to your doctor about it?

Sarah

Batty
14th December 2010, 20:03
hi sarah was just wondering if you noticed any difference in the symptoms of mnd when you stopped taking rilutek? my partner has just started getting a bad stomach and acid reflux he has only been taking rilutek since feb! he really dont want to come off it but any feed back would be greatly appriciated thanks jodie

Hi Jod and Mik

Very interested in your comment, I have been taking Riluzole for over 6 years and have recently started suffering from horrendous wind and acid refulx. Would be very interested if anyone viewing this has any information for us both!

Where are you in Northants? I live in Market Harborough. Feel free to ask for any help or advice through my experience of MND.

Regards,

Mark

mik
14th December 2010, 21:13
hi sarah and mark thanks for replying, sarah we are not 100% sure it is, mik has got to check its not a bug first but mik has read on other mnd sites that alot of people have had acid reflux hes also been told that the medication hes takes to stop the acid reflux may be causing the other stomach problems. He is due to see his neuro in january so will discuss it more with him then. He has also read that taking rilutek can cause gastro problems, and mark we are currently living in daventry but hoping to move back to north devon to be nearer to family and friends

computatec
15th December 2010, 23:12
Hi CB

It is true that clinical trials have not found any evidence that supplements halt or slow down the progress of the disease. However, there is enough anecdotal evidence to indicate it may help some folk, so I think it is worth trying. I was discussing this with a neurologist the other day and although he did not believe in supplements he said we should never under estimate the Placebo Effect. The clinincal trials have not found any harmful effects from quite high doses of supplements, so it would appear safe for us to try them on a suck it and see basis.

computatec
15th December 2010, 23:22
Hi Mark

I also suffer from very bad wind and acid reflux, but this started long before I started to take Riluzole so I dont think it is a side effect of the drug. My neurologist thought that the wind and acid reflux were not part of MND and so I was referred to a gastroenterologist who put me on Omeprazole. This helps but does not fully control it, especially in the evenings.

computatec
15th December 2010, 23:24
Hi John

I have spent some time viewing the material you gave a link to. Very interesting and thought provoking. Thanks.

Robyn Copley-Hirst
22nd December 2010, 11:58
Hi everyone,

This thread started out discussing Rilutek, but a lot of comments have started to mention vitamins and supplements. I've moved a few posts into a new thread: Experiences with Vitamins, (http://forum.mndassociation.org/showthread.php?58-Experiences-with-Vitamins) so that any new members who might find information and experiences on vitamins useful will be able to find this info more easily.

I hope this helps,

Robyn

SallyB
4th April 2011, 20:08
Hi
I've just recently been diagnosed with ALS after misdiagnosis of Tranverse Myelitis then progressive MS. I've started on Rilutek and wondered if anyone else noticed an increase in weakness to their legs and speech ? I took the medication for nearly 4weeks before having to stop it briefly after an adverse reaction to Citlapram ( only took for two days) where the Gp advised me to stop taking everything for a few days. Since re-starting Rilutek I've found yet again my speech has got more slurred and walking more difficult yet when I came off it things slighty improved. I've read people get nausea and gastric problems which I've put up with but never read anyone else having the above problem. I'm now in a dilemma whether to carry on with the medication or not?
Having only just been diagnosed it's a bit of a minefield and overwhelming at the moment. However I'm determined to make the most of each day .
Thanks

G60dubber
4th April 2011, 21:53
It's interesting you say this, I started with weakness early 2009 and it was only really noticeable though not major by the sept 09 when I was dx. I could walk fine, speech fine and hands were a bit affected but not hugely. Started rilutek at the start of oct and by christmas my hands were really weak and was generally a lot weaker. I actually staopped taking it over christmas and noticed slight improvement.

I spoke to the consultant in jan and they stated that the weakness was not attributable to the rilutek..... I seriously have my doubt. Yes this disease can progress but there seemed to be a correlation between the progression and the medication. I only agreed to go back on having been told that to qualify to the dexapram trial I had to be on it.

My big question is what effect does rilutek have (due to the glutamate suppression) if you DO NOT have MND. At the end of the day, these guys are experts but no one can categorically say that you have mnd or not. What if they are wrong.... just a thought. I will always have that little bit of me that will not be satisfied that they have checked everything

Graham
4th April 2011, 23:21
Hi Sally,

I would suggest you go with what your body is telling you. It is a minefield. I am told Rilutek extends life by 3 months and less in patients who last longer.

Best wishes

Graham

Vane
5th April 2011, 09:06
Hi there,

Welcome.

I agree with Graham that its a minefield and there is definitely so much that they dont know or understand about MND. My consultant has told me that Rilutek might extend life up to 18months not 3- I wish would they would sing from the same hymn sheet as I have now had different info/opinions from 2 different consultants as I had to change regional hospital. I had to cut down my dose of Rilutek to half dose as it was making me feel lousy - Im now trying to find out if I am eligible for the new trial since cutting my dose (which has been stable for 60 days). Does anyone else know about this?

I think the forum is a really good way of monitoring the disease as we all have first hand knowledge, so lets all keep talking,

I also wanted to say, on a positive note, that the medics' lack of knowledge of MND always gives me that tiny ray of hope vanessa x

Robyn Copley-Hirst
5th April 2011, 10:18
Hi Everyone,

I've merged the 'Rilutek' and 'Experiences with Rilutek' threads together. I thought that both discussions could benefit from seeing everyones experiences.

Hope that helps,

Robyn

SallyB
5th April 2011, 19:10
Thanks for that. I've decided to leave off the medication for a week then re-start on a lower dose and take it from there. I also have seen two consultants, one who reading between the lines doesn't believe there is any benefits to Rilutek, and the other one the complete opposite and believes it can extend life more than 3 months. (isn't it frustrating!)
thanks to the responses. Certainly food for thought.

Graham
5th April 2011, 19:41
Hi Sally,

Another twist, I am dx PLS and probable ALS, but looking at Transverse Myelitis, I have found a better fit! Muscle group recovery after 2 years and bowel/bladder involvement. It has taken 3 years for all muscle groups to be involved. And the cherry on the top is pnuemoniae mycoplasma involvement! See my rantings on Build-UK.

So a big thanks for your post from me. I have an interesting tete-a-tete coming with my neurologists.:mad:

Best wishes

Graham

wheelchairking
6th April 2011, 07:35
I had a similar experience to SallyB. Within 24hrs of starting the course of rilutek my speech and mobility declined rapidly and I was feeling physically exhausted. Stopped taking it and 24hrs later I was back to my previous state.

Vane
6th April 2011, 07:41
HI all,
This is very intersting isnt it, the amount of people who have noticed that symptoms have got worse when taking Rilutek (scary) Im going to my motor neurone clinic on Thursday so will bring this up with consultant just to highlight the concern and see if he has any answers or is aware of this.
vanessa

SallyB
6th April 2011, 09:56
Hi Vane
I will be very interested to hear what the consultant says?
Thanks Sally

anngr
6th April 2011, 19:55
Hi All

My husband was diagnosed in August last year, at that time he had been having minor problems walking for about 2-3 years and had just started having problems with his right hand. He was prescribed Rilutek in late August and his deterioration was so rapid after he started taking it that by December he couldn't do anything for himself. he passed away in February. I have often wondered if the Rilutek was the cause of his rapid deterioration as his Mum had MND for 15 years but it never stopped her walking or driving. On reading spme of your stories I wish we had questioned the consultant more about it but we didn't think he would be prescribed something that might have the opposite effect to prolonging life. Ann

jadedjohn
6th April 2011, 20:18
This is a really worrying thread, i have been taking Rilutek for about 4 months, and my health is deteriorating - i think this thread needs to be taken up with a senior neurologist, do i risk stopping taking it.

john

G60dubber
6th April 2011, 20:51
having asked this question before I expect the answer will be 'it's the disease degenerating', I am having another trial of not using it (as I did at christmas) to see if there is any improvement again. Hindsight would be wonderful to know whether the progression would have been as rapid without taking it though... guess I'll never know. I would be interested to know whether anyone in the clinical trials reported the same as the thrust of this thread?
Does anyone have a close relationship with their neuro and could get these questions asked pronto?

Also, is Rilutek only for ALS or for PMA, Bulbar etc as well?. The reason i ask is that my initial dx was PMA, the 'upgraded' for want of a better word ;-) to ALS, this was when I was prescribed Rilutek.

Robyn Copley-Hirst
7th April 2011, 13:49
Hi Everyone,

I thought some input on this from our Research team might be useful as John's right, I can see why reading this thread may be worrying when considering the pros and cons of taking Rilutek. I asked our Research team if there was any known link with a sudden deterioration in a persons MND.
__________________________________________________ _____________________________
Hi Robyn,

As far as I am aware, and from looking at research articles, there is not a link between Riluzole and a sudden deterioration. Through the original clinical trial, the drug showed an average of 3 month increase in life. If the drug were related to deterioration, this would have been picked up on in the clinical trial as it would have been unsafe.

It may help to explain the progression of MND – the deterioration of motor neurones can be thought of like a breaking rope bridge. Over time, different strands of rope will fray and come apart. But the bridge, and the motor nervous system, still functions. This is because the other motor neurones will compensate for this loss to a certain point. It is only after this point that the connection can no longer be held due to the increased pressure on the remaining motor neurones. This results in what looks like a staggered progression pattern – when actually, it’s quite linear.

There is an ongoing debate around riluzole. It could be more effective than the original trial suggested. Depending on the ‘normal’ progression of someone, some researchers/clinicians do believe that it is more effective than we currently appreciate. However, it is impossible to know whether the drug is working in any individual person– it’s unfortunately not a case of feeling better like taking a pain killer. Taking riluzole is therefore a personal decision that they should discuss with their neurologist.

If you are worried, you should speak with your neurologist or to MND Connect (08457 626262). We also have an information sheet on riluzole in the care section of the website.

Hope this helps!

Kelly_____________________________________________ __________________________________

The information sheet mentioned can be found here (http://www.mndassociation.org/search_clicks.rm?id=233&destinationtype=2&instanceid=225425).

I hope this info is helpful to you all.

Robyn

Graham
7th April 2011, 19:47
Hi All,

The assumption is people are correctly diagnosed with MND. We know how difficult it is to get that diagnosis. What is the affect of riluzole on PPMS, ADEM, Myelitis etc? These tests have not taken place.

Best wishes

Graham

Z3 Driver
7th April 2011, 20:34
i have been on Rilutek since jan and i have been having blood tests each week to monitor 2 specific enzymes in my blood who's levels have trebled and are a little unstable. in myself i feel ok a little bit of heartburn now and again but that maybe eating lots of spicy food and higher than allowed quantities of alcohol ;) . i take 2 tablets daily and if they work they work if they dont then ive lost nothing. would i notice 3 months extra ? who knows . still i believe if the side effects aren't causing me a problem then i will continue but if they do cause me pain i'll save the NHS some money and forget about them and the 3 months. Nothing ventured nothing gained my motto.

computatec
7th April 2011, 20:46
This is a really worrying thread, i have been taking Rilutek for about 4 months, and my health is deteriorating - i think this thread needs to be taken up with a senior neurologist, do i risk stopping taking it. john

Hi John, like you I am very worrried about this. I have been taking Rilutek for six months and I had no reaction to starting it. I am now suffering from slurred speech and the last three weeks have seen a catastrophic reduction in my mobility and my core muscles will no longer suport me.

I am thinking of stopping Rilutek for a few days to see if there is any change. I can't imagine that a few days off would have any disatrous result. If there was no change I would start taking it again.

I am also curious as to how many ALS patients are taking it and how many are not, but we don't have a database to collect information like this. Meanwhile I will trawl all the other sites I can find and look for information on Rilutek.

Clive

jadedjohn
7th April 2011, 21:22
Clive

well i stopped taking my Rilutek today, so missed my Am and pm dose. im still up on my computer now, today, i managed to cut my grass 1/2acre garden with petrol lawn mower. i feel today as though im not ill at all.

im going to lay off it till the weekend and see what happens, like you i cant see any problems stopping for a bit.

i will keep this post updated as i go...

john

computatec
7th April 2011, 22:16
Hi All,

The assumption is people are correctly diagnosed with MND. We know how difficult it is to get that diagnosis. What is the affect of riluzole on PPMS, ADEM, Myelitis etc? These tests have not taken place. Graham

Hi Graham

Have a look at this: http://www.sanofi-aventis.ca/products/en/rilutek.pdf It takes a few seconds to load, so hang in there.
On page four, you will discover that Rilutek has only been tested on ALS and that it should not be prescribed fro any other forms of MND.

Clive

computatec
7th April 2011, 22:23
John, I am not taking this evenings dose and will leave it off until the weekend and see if there are any changes in my condition. Together with Sally there will be three of us doing this test.

Clive

jadedjohn
8th April 2011, 10:14
excellent - keep us posted!

gypster
8th April 2011, 15:53
Unfortunately each of us experiences our own unique variances with this disease and what helps or hinders one person doesn't necessarily have any relevance to anyone else. At the end of the day we each find our own set of "rules" which help us manage this on a daily basis.

computatec
8th April 2011, 19:32
Unfortunately each of us experiences our own unique variances with this disease and what helps or hinders one person doesn't necessarily have any relevance to anyone else.

Yes, you are absolutely correct. Any results we obtain from temporarily suspending Rilutek will only have relavence to each of us individualy and will not be applicable to the wider population of patients, so we must be careful how we publish our findings.

It is very hard to find any close similarities between patients as the variables are so numerous. Athough we are all going to the same destination our journeys are highly individual.

Clive

Michaeldw
11th April 2011, 19:30
I am taking Rilutek and am into my 10th week, so far I seem to be slightly more tired. Increased congestion may also be a side effect but, living in Spain, it may be slight hay-fever as we are well into spring, temperatures rising, pollen etc.

If I have more to report I will do so.

Michael

computatec
11th April 2011, 23:12
Back on the Rilutek

After three days without Rilutek there was absolutely no change in the way I felt or to any of the other afflictions that come with this disease. I am going to start taking Rilutek again right away as it does not appear to be causing me any problems.

John and Sally, how did you get on with your testing?

Clive

Graham
11th April 2011, 23:45
Hi Clive,

The rilutek literature indicates 7 weeks to the drug wearing off. A more immediate effect would indicate rilutek having an adverse reaction on a non motor neuron cell condition, maybe.

Best wishes

Graham

computatec
12th April 2011, 16:08
Hi Graham,

So our little experiment was a waste of time then. I would not like to risk leaving off Rilutek for as long as seven weeks to find out what happens.

The patient leaflet states that the drug should be taken on an empty stomach, twice a day at twelve hourly intervals. Because of these precise instructions I concluded that it left the body very quickly. I think the measurement used for the decline in concentration is called the "Half life", like radiation!!

What literature do you have, Graham?

Clive

Graham
12th April 2011, 19:41
Hi Clive,

The literature was the link you gave me earlier in this thread.

Gastric and liver function problems are flagged up as prominent side effects.

14% of trial participants gave up on the drug during the trials due to adverse reactions. The literature also recommends monthly check ups.

I do not believe you are wasting your time, although it would seem like restarting rilutek so early would not yield any indication.

Doing your trial takes great courage and I am perplexed that medics can't give support with these decisions.

Three years ago I was prescribed Baclofen and after four tablets I had lost my swallow function and my intestines stopped working. I was told to give the drugs a chance to work?!

Best wishes

Graham

SallyB
12th April 2011, 20:06
Hi All
I yet again had weakness and slurred speech when I re introduced Rilutek. Everyones comments have been really interesting but I agree we are all unique and experience different problems. I've come to the conclusion I 'm drug sensitive as I've also had problems with Baclofen and Citlapram. So for the moment I am staying off medication as life is easier without it.

Sally

Graham
13th April 2011, 00:20
Hi Sally,

What did your MRI scans reveal? Have you had contrasted scans showing where the problem lies?

I say this because my contrasted scans showed high signal change in the cortico-spinal tract and mid brain. I am suspecting my motor neurons are ok but the myelin has been shreded between cortex and thalamus by infection/inflammation. I have brisk reflexes, Babinski and atrophy.

You said your original dx was myelitis?

Reaction to Baclofen and Rilutek could be very significant.

Best wishes

Graham

SallyB
13th April 2011, 17:09
Hi Graham
My first MRI scan was in2007 which showed a bulging disc between the spinal nerves C7&C8 after having neck pain radiating down the right arm. After 18 months the symptoms had gone as the disc eroded. However I stared with spasms in my feet and hands, also muscle cramps in my legs. In May 2009 my left foot started dragging and Tranverse Myelitis was dx after a scan showed inflammation of the nerves. More symptoms slowly emerged although all further scans were normal. Progressive MS was then suggested but after another normal scan and clear lumbar puncture Mnd dx.

I have bladder problems ie urgency but this is been investigated as a seperate issue as it doesn't normally occur with Mnd.

How do you think a reaction to Rilutek and Baclofen be significant?

Oh yes originally when I went with neck pain I had brisk reflexes.

Kind regards

Sally

Graham
13th April 2011, 19:42
Hi Sally,

I have mild neck/spine pains, bladder & bowel issues, have been dx PPMS similarly. After PPMS my dx changed to PLS then ALS. In our cases spreading inflammation is significant. Our adverse reaction to these CNS drugs is similar. This could be a distinction between the variations of MND.

Best wishes

Graham

computatec
13th April 2011, 22:51
Hi Sally
I was fascinated to see that your onset to MND was very similar to mine.

In October 2009 I was suffering with very sever lower back pain with tingling and numbness in front of my right thigh. I was also experiencing very restless legs and feet at nights, with uncontrollable jumping of my limbs which I dismissed as “Restless leg syndrome”. The next thing was a noticeable weakness in my abdominal muscles and the inability to lift things in front of me. Lifting things at my side was no problem, but lifting or carrying anything in front was very difficult. Then cramps started in my legs and feet and the pain was very severe. By December I was getting cramps in my hands as well. My thumbs would turn inwards to my palms and lock solid with terrible pain. I had to force my thumbs away from my palms to release the cramp.

In January 2010 I went to the doctor with all this and was referred to an orthopedic specialist for my back and give quinine tablets for the cramps. The quinine did nothing to alleviate the cramps. I saw the specialist in March and had an MRI scan of my lower back. The diagnosis was multi-level spondylitis with arthritis in the facet joints. Apparently my back was not bad for a 76 year old and no disk problems were seen. I was offered spinal injections, which I declined. I was referred for physiotherapy to strengthen my core muscles. No explanation was found for the weakness in lifting in front.

I saw a physio in June. I was unable to do any of the exercise because of muscle cramps, so I was referred back to my GP with a recommendation that I should see a neurologist.

The next problem to appear was gastric reflux and severe constipation. I was referred to a gastro enterologist who ordered a cat scan. Everything was normal in that area, but while examining me the specialist noticed fasiculations in my arms. He wrote to my GP to say he suspected MND.

I had my first consultation with my neurologist in September. I was told I needed to be admitted to the Royal Free hospital in London for a week to have investigations. I was admitted in October and diagnosed with the ALS form of MND. I was given a second opinion by Dr Richard Orrel, who confirmed the diagnosis.

I was put on Rilutek immediately and noticed no side effects. I have had liver function and other blood tests regularly since then and all is OK in that area.

In addition to the expected signs of MND I have noticed several disabilities I call “Other afflictions”. The American ALS association has identified 19 of these and I will post the list on the “Other afflictions” thread later. My particular afflictions are Cramps, Fatigue, Urinary urgency, swelling of leg and foot, drooling/ salivation, post nasal drip, acid indigestion, speech problems, dry cough. There is always the possibility that Rilutek may be causing or aggravating some of these conditions.

My mobility has steadily decreased to the point that I can only stand for a few minutes and cannot walk without assistance.

Clive

G60dubber
13th April 2011, 23:41
I can also add to the 'bad back' theme! I was initially dx'd with cervical spondylosis of c5/c6, with significant calcium build up on the vertebrae. Lots of vertebrae and shoulder joint crunch when in use along normal planes of motion.
Mine started with weakness in the hands but had been suffering with a sore trapezius muscle for about 2 years previously which had been caused by a training injury that never healed. After hands it went to shoulders and then legs.

SallyB
15th April 2011, 16:47
Hi
I've always wondered if my original neck problem triggered off the onset of Mnd? Interesting to hear other people have experienced similar neck/spine problems initially.

I can also identify with Clive's "other afflictions" and have all of them except fatigue (which seems to be unusual that I don't get tired?!)

Sally

Graham
15th April 2011, 19:09
Hi Clive,

Interesting you say your problems started with LBP and you had stingy sweat in your legs. People with PBP MND onset often complain of stingy eyes. My symptoms are diffuse and the sticky sweat is widespread.

Best wishes

Graham

computatec
17th April 2011, 18:07
Hi Graham

Around the time of my dx I suffered with terrible itching around my ankles that drove me mad during the night. This has now completely disappeared. A continuing problem I did not mention is heavy night sweating, soaking the bedclothes. This does not happen every night and I can't find any logical explanation. Fatigue is so bad at times I fall asleep several times during the day, which severley limits what I am able to get done.

Clive

Graham
17th April 2011, 20:06
Hi Clive,

This excerpt shows your problems do fit some pattern.

"Analysis of ALS patients used in obtaining our preliminary data indicates that none had familial ALS, and they often had unexpected signs and symptoms. In addition to muscle weakness and wasting, speech and swallowing problems, fasciculation, cramping, among other signs, several ALS patients had rheumatoid arthritis signs/symptoms (7/27), history of asthma, bronchitis or pneumonia (9/27), allergies (7/27), rashes (14/27), night sweats (11/27), diarrhea (8/27), digestive problems (10/27), sleep problems (12/27), nausea (11/27), overall fatigue (22/27), dental problems (11/27), and infections (25/27) [Note: 4 patients are being evaluated]."

From:
http://members.tadaust.org.au/shakel/mycoplasma.htm

The best way I manage fatigue is to sleep for longer. Zolpidem 5mg triggers sleep. I'm sleeping 12/13 hours at present.

I have a mild fever too, easy to sweat. There is an opinion that a systemic infection is present for some of us.

Our GPs and consultants won't comment.

Best wishes

Graham

Vane
18th April 2011, 08:40
Hi Graham,
I have read the interesting text from the link in your last post and although I dont understand a lot of it, as Im not medically trained, I find it interesting that it seems to indicate that long term infections could be part of the picture of ALS - I contracted toxoplasmosis and subsequent meningitis in 1985 which resulted in chronic (although improving) fatigue for all the years up to diagnosis of ALS december 2010. I have always felt, instinctively, that there is some connection between my original long term infection/illness and where I am at now. However, although I have put this forward to all consultants it has been dismissed as purely coincidental...... I shall read again and try and absorb more. Please let me know if I am on the wrong track too as I am a bit bamboozled by it all. Its very frustrating not knowing where to take this information and our thoughts isnt it.
vanessa

Michaeldw
18th April 2011, 16:49
Hi Graham and Clive,

I too have, for some time, heavy night sweating. I am starting a week not taking Rilutek, that's saving 84.25 euros as I cannot yet get it on the Spanish national health system. Looks like we will have to return to the UK sooner rather than later to avoid bankruptcy.

Incidentally, Clive, I enjoyed your " A sense of perspective" case study 1, in the latest Thumb Print.

Kind regards and best wishes
Michael

Graham
19th April 2011, 22:59
Hi Vanessa,

You have a story to tell. Prof Nicolson was hired by GW Bush to investigate ALS among war veterans and being thorough and with access to more sophisticated test equipment, he was able to find a significant incidence of mycoplasma infection in ALS patients. Although he asserts that the infection is only an agent for MND.

I had a very heavy chest infection immediately prior to my MND, and got the standard roll of the eyes and sly grin treatment too. Having had anti-bodies in the CSF, that latterly cleared, it seemed there was a potential of infection in my case too.

Our instincts may be right or wrong, but until answers are found, doctors should show better bed-side manners in my view.

Best wishes

Graham

Z3 Driver
25th April 2011, 20:05
Hi i have just returned from a great family holiday in Mexico and was in deep thought prior to going as to whether i would have the rilutek whilst on hol. The acid burning was worsening and i was determined it wasn't going to ruin an expensive holiday. The eating excess and of course the cocktails and mexican lager were a recipe for chronic heartburn so i decided not to take it.
I had no problems with heartburn and felt healthy. but my right hand does seem weaker or is that me reading into it.
anyhow the question is , now home shall i go back on it ?
are the extra claimed months worth it ?

thoughts welcomed.

computatec
27th April 2011, 16:21
Hi Michael,

If you have been diagnosed recently think carefully before stopping as Riluzole is most effective if started early and less efective if you have had the disease for some time already before starting to take it. It will take about a week for Riluzole to be eliminated from your system completely so perhaps ten days is needed to see if there are any improvements without the drug. Have a look at this link before you decide to stop:http://www.sanofi-aventis.ca/products/en/rilutek.pdf

I am very surprised the Spanish NHS will not provide Riluzole. Over here it can only be prescribed by a consultant neurologist and then be repeated by a GP. I think it will be the same in Spain, with the prescription having to be inspected and authorised by another officionado. If you have a friendly pharmacist he could look it up for you and tell you how it has to be prescribed. My wife was prescribed Clopidogrel and that was by a consultant with subsequent "Inspections" due to its cost.

computatec
27th April 2011, 16:49
Hi Z3

I was facing a similar dilema. I stopped for ten days while we were away from home and felt quite twitchy about wether I was harming myself or not. I found no improvement while off the Riluzole so I have started taking it again.

I was given Omeprazole for the heartburn but it did not help much. This has now been changed to Esomeprazole and it has made a great improvement for me so now I just have pressure from wind but no heatburn.

Clive

Z3 Driver
27th April 2011, 21:27
Well i have had a blood test since coming back from hol and 2 weeks rilutek free. The levels have come down but not by much so my liver still unstable. Anyhow started to take the rilutek again as my doctor said he'd fully support me to resolve the heartburn side effect. He also signed a form to give me medical excemption which gives me free prescriptions. do others have this?

computatec
27th April 2011, 22:27
Hi Z3,

When you start taking Riluzole you are supposed to have a blood test for Liver Function and full blood count at monthly intervals for three months to make sure you can tolerate the drug. After that you should have the tests every three months. The manufacturers literature explains this, and also that if you have impaired liver function you should not take it. You could print out the information and take it to your neurologist for discussion if you are worried.

Clive

Chris
28th April 2011, 11:10
Well i have had a blood test since coming back from hol and 2 weeks rilutek free. The levels have come down but not by much so my liver still unstable. Anyhow started to take the rilutek again as my doctor said he'd fully support me to resolve the heartburn side effect. He also signed a form to give me medical excemption which gives me free prescriptions. do others have this?

I used to get a lot of heartburn and indigestion when i first started rilutek but stopped after a few months, and i do love my madras currys :-)
I too got the nos exemption card even though i was told i was unlikely get it, mnd is not on the list for exemption apparently.
I will continue to take rilutek as long as my body takes it, i will also take them when i go on holiday in 2 week From:-)

jadedjohn
29th April 2011, 13:08
Chris - how did you get an exemption card?

john

Chris
29th April 2011, 13:21
My mum got application form from doctors or chemist and filled it in for me.

SallyB
29th April 2011, 21:58
Hi John

I also got an exemption form from my Gp who has to sign it. Although Mnd isn't listed as exempt i got it
on the grounds

"A continuing physical disability which means you cannot go out without help from another person"

Hope this helps

Sally

kev w
6th May 2011, 13:09
hi sarah, jod an mik, i was on rilutek 2 a day and i had diarrhoea i cut it down and only take one a day but have found i need to take antacids for the stomach problems acid build up and a bad stomach but i seem to be ok on this doseage i manage it quite well now but think it is trial and error with everything and what works for one is not the case for others but if it works for the person then stick with it

kev

Michaeldw
17th May 2011, 23:02
Hi everyone, I stopped taking Rilutek because I was feeling more tired and worst more depression. Took it for 10 weeks stopped about four weeks ago. Just got home, to Spain, after a week in UK seeing family and attending MND Assoc. conference in Reading, Sunday 15 May.

Michael

Michaeldw
17th May 2011, 23:17
Hi Clive,
Thanks for your reply, in April, sorry, I have only just got back on this forum tonight May 18th. I have an appointment with a Spanish National Health Neurologist at the end of May to try and get him to give me a prescription for Rilutek. Also although my dx was last summer I had the symptoms two and a half years previously.

Michael

ian
18th May 2011, 09:37
After three months on Rilutek I have now developed an irritating cough at the top of my windpipe that is aggravated by speech. I don't have a sore throat or fever and feel alright in myself. Dr thought it may have been caused by acid reflux but Gaviscon has cured that but not the cough.
Has anyone else experienced a similar problem?

G60dubber
18th May 2011, 09:52
Ian, I suffered a constant cough for months the same a you describe whilst on it. Since stopping the cough has gone...

Vane
18th May 2011, 13:14
Hi there, I have recently starting to get a tickle in the top part of my throat which makes me cough (my cough is pathetic and very weak).
Im not sure if this is the beginning of a swallowing problem or something else (such as your problem Ian) but its certainly new - I take 50mg riluzole each day (had to reduce down from 100mg as it made me feel dreadful). I also seem to have developed a loud buzzing in my ears which is continuous.and its driving me absolutely mental - unsure whether this is a build up of mucus because of weak coughing muscles????
Does anyone have any of these symptoms? vanessa

G60dubber
18th May 2011, 18:41
My cough was really weak and I too had the same concern that my resp muscles were shot. Since stopping rilutek all seems fine and was good for blowing up balloons for daughters birthday party. Would seriously recomend balloon blowing as aerobic exercise once mobility decreases.

Michaeldw
11th July 2011, 22:12
Hi all,
Still not taking Rilutek but have seen a very nice, lady neurologist, through the Spanish Health Service. The neurologist said she required another, up to date emg report, she would ask for it to be arranged urgently and an appointment with a physiotherapist. She also said I would get a prescription for Rilutek.

That was 31 May, to date I have seen the physio. but no appointment yet for the emg.

So plan B, I have an appointment with the original neurologist, through our insurance scheme, July 26th, when I will tell him what has happened since our last meeting earlier this year. He will assume I am still taking Rilutek. I will explain my decision to stop taking Rilutek and because of the cost would taking half dose be beneficial. In the meantime I will ask the Denia neurologist if I provide an up to date emg report would she accept it. If that's OK I may be able to get the insurance company to fund the emg.

I know the tale is complicated but if I can get Rilutek on the National Health I will resume taking it.

Michael

munster
13th July 2011, 15:02
Hi John,I have just been diagnosed last week with ALS and have been taking Rilutek for 5 days, if I notice any changes I will let you know. The experts at the Care Centres would advise you to take Vitamins if they thought they thought they would benefit you.I agree with you ,nothing to lose but their are ruthless people out there who are just trying to make money out of people in our position

SON
20th July 2011, 05:38
Hey
i am from India.. my mom is taking riluzole alone with thyrofit,rabee, remylin,vernace tabs - it is good combination pls advice

Robert
20th July 2011, 22:12
Hi Computatec,I'm Bob although my forum name is Robert.I joined May 2011 diagnosed March 2011 age 63, I reckon I first noticed a change in myself 21months ago.Anyway perhaps you can answer some questions I have about Rilutek,I am a bit apprehensive about taking it as I feel perhaps I should wait until my condition worsens such as when I get breathing problems.I take curcumin which I am told is the natural equivalent of rilatek which is chemically formulated.I have just started taking B12 as I read on the web that it can balance the glutamate in the brain which it seems is a major contributer to MND.You are my first contact other than my introduction . I have read other threads but you seem to have read up a bit about it so thats why I am contacting you,hope you don't mind. Kind Regards Bob.

computatec
23rd July 2011, 20:48
Hi Robert,

I think all neurologists offer patients Rilutek as it is the only drug licenced for MND. The manufacturers claim it is best started as soon as possible after diagnosis, but many of us have the disease a year or more before it is diagnosed. Some patients have side effects and don't continue with it, while others take it without any problems. The drug does not have any beneficial effect on any of the problems we have to endure as the disease progresses but it is cliamed it may extend survival by three months. I took Rilutek for seven months without aparent problems and then developed a dry mouth and a cough which stopped when I stopped taking the drug. My neurologist felt the possible benefit was not worth the misery of the side effects so I am now off it altogehter. Each of us has to make thier own decision about Rilutek and the experience of other patients is not much help. I am interested in your information about circumin and glutamate production so please post any links you have to this.

Vitamin B12 is good for your mental state and is worth taking. I take Vitamin E Complex (Mixed tocopherols) Ubiquinol (a better from of co enzyme q10) and I have recentlly started Olive Leaf extract, a natural anti bacterial as a prophylactic against infections in throat and chest.

Clive

Robert
24th July 2011, 20:44
Hi Clive,the site I looked at about excess glutamate is www.dana.org in search box put protecting the brain from a glutamate storm then click on 3rd link down.
There's 6 pages of interesting reading including the brain blood barrier that I think you're familiar with.I am taking vit B12 as I read that this could be the key to removing the excess glutamate from the brain through the brain blood barrier and into the body's blood stream then being dispersed through natural outlets.We shall see! Regards Bob.

Robert
24th July 2011, 20:55
Sorry Clive forgot about the curcumin it is an extract of tumeric its a bit expensive as i could only find one supplier and all others just supply tumeric which has only 2% curcumin I am told it does the same as rilutek only naturally.We shall see! Regs Bob

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