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Quinine Sulphate
millstones
Posted: Sunday, February 05, 2012 11:04:30 AM

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Irene is taking 200 mg tablet of the above daily and has done since September, October 2010 . She was prescribed them by her GP to help relieve leg cramps she was experiencing. Her symptoms started January 2010 and her dx came April 2010.

Ron and Louis talk about doctors not knowing what they are doing when prescribing so I thought I would take a look at what quinine sulphate was all about. On a UK website it stated that it shouldn't be taken if you are suffering from "muscle weakness". Is als considered to be suffering from muscle weakness? Another search to see how the drug(which is for the treatment of malaria with relief from leg cramps as a side effect)works gave the information that it works by delaying the time the muscle takes to contract. It also mentioned that it could effect balance.

Reading these raises the question :- is this something that makes any sense with als?

If the answer is no then should I just stop or after 17 months will Irene have some dependency? She doesn't experience leg cramps but is that because of the quinine sulphate or because her illness has progressed beyond the point at which the leg cramps occur? I presume the answer is to stop taking the tablets and see what happens. I will soon hear about it if the cramps return.

The last person to suffer from als in our small community (2-3000) died in January 2010 as Irene's symptoms started. Our GP was his GP thrughout his illness. He was a rapid progresser and I wonder now if the quinine sulphate could have played a part in both his and Irene's speed of progress.
Olly
Posted: Sunday, February 05, 2012 11:50:06 AM

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John,
unfortunately I haven't seen any papers concerning quinine sulphate and if it helps other than cramps in PALS.

With PALS it really does come down to the self testing method.
Just check if there is any dependency in taking it over time and if there is what the symptoms of withdrawal are?

There may also be some cramps returning, if stopping, as the drug is flushed out but this may stop after a few days as the body stabilises?

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
slowdancer
Posted: Sunday, February 05, 2012 2:17:56 PM
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is she already on mg?

if not, try mg-citrate , 3 times a day each 300 mg of mg- citrate.

Pete
millstones
Posted: Sunday, February 05, 2012 2:55:07 PM

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Further searching came up with the fact that the FDA banned the drug for everything except malaria, which was a life threatening disease, in 2006. There had been 100 deaths linked to the drug. Another site suggested that once the symptoms(leg cramps) had gone the drug should be stopped to see if symptoms returned.Irene's doctor has signed repeat prescriptions without any enquiry ever since the first 4 weeks supply17 months ago.

Sounds increasingly like one to avoid!!

Thanks Slowdancer will stop the drug and make a note if the symptoms return.

John
ENV
Posted: Sunday, February 05, 2012 5:36:52 PM

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a relative drug (quinidine) is a major ingredient in Neudextra, the anti-emotional lability drug for pseudobulbar affect.

-- Le Meilleur Vin Avec Les Meilleurs Amis --

The comment above is my personal opinion. I do not represent ALS-TDI
Olly
Posted: Monday, February 06, 2012 12:12:00 PM

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Nocturnal leg cramps and prescription use that precedes them: a sequence symmetry analysis.
Garrison SR, Dormuth CR, Morrow RL, Carney GA, Khan KM.
Source

Therapeutics Initiative, University of British Columbia, 307-2176 Health Sciences Mall, Vancouver, BC V6T 1Z3, Canada. scott.garrison@ti.ubc.ca.
Abstract
BACKGROUND:

The use of diuretics, statins, and inhaled long-acting β2-agonists (LABAs) is linked to muscle cramps but largely by anecdotal evidence. This study sought population-level data to better evaluate these associations.
METHODS:

Linked health care databases containing prescribing information (December 1, 2000, to November 30, 2008) about 4.2 million residents of British Columbia, Canada, were evaluated using sequence symmetry analysis to determine in adults 50 years or older whether new quinine prescriptions (initiations of cramp treatment) increase in the year following diuretic, statin, or LABA starts. The statistic of interest was the sequence ratio: the number of quinine starts in the year following index drug introduction compared with the number of quinine starts in the preceding year (adjusted for age and time trends in population prescribing).
RESULTS:

Adjusted sequence ratios (95% CIs) for the 3 drug classes were 1.47 (1.33-1.63 [P < .001]) for diuretics, 1.16 (1.04-1.29 [P = .004]) for statins, and 2.42 (2.02-2.89 [P < .001]) for LABAs. For diuretic subclasses, adjusted sequence ratios (95% CIs) were 2.12 (1.61-2.78 [P < .001]) for potassium sparing, 1.48 (1.29-1.68 [P < .001]) for thiazidelike, and 1.20 (1.00-1.44 [P = .07]) for loop. For LABA subclasses, adjusted sequence ratios (95% CIs) were 2.17 (1.56-3.02) for LABAs alone and 2.55 (2.06-3.12) for LABAs-corticosteroids (P < .001 for both).
CONCLUSIONS:

Cramp treatment was substantially more likely in the year following introduction of LABAs, potassium-sparing diuretics, or thiazidelike diuretics, and 60.3% of quinine users (individuals experiencing cramp) received at least 1 of these medications during a 13-year period. In contrast, statin and loop diuretic associations were small. Physicians should be mindful that the use of these medications may worsen symptoms in patients experiencing nocturnal leg cramps.
http://www.ncbi.nlm.nih.gov/pubmed/22157068

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
millstones
Posted: Monday, February 06, 2012 2:43:48 PM

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Olly,
Irene hasn't had diuretics, statins or LABAs. The cramps started shortly after the ALS and looking at others they seem fairly common in ALS patients. Irene usually has 1 tablet crushed down her PEG last meal of the day. We did without last night and so far nothing. I think I will stay away from them having read what they can do.

thanks.

John
RL Schafferr
Posted: Monday, February 06, 2012 5:40:18 PM

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Told u John, Drs. Will kill u. They have no knowledge how to treat ALS patients. And don't do much better on healthy folks. Lipititor is a dangerous drug, and may have helped cause my als.
millstones
Posted: Monday, February 06, 2012 6:06:13 PM

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Hi Ron,
I thought you might have comments. Bit reluctant to stop everything but this one has been going on a while and wasn't sure if it was still needed so I thought I'd read a bit about it. Looks like it should never be given to anyone let alone ALS sufferers.
Thought Irenes early balance issues were down to ALS but after reading what this drug can do I'm now not so sure. Can't rewrite history but we can influence our future.

John
ichisan
Posted: Monday, February 06, 2012 6:36:51 PM
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millstones wrote:
Hi Ron,
I thought you might have comments. Bit reluctant to stop everything but this one has been going on a while and wasn't sure if it was still needed so I thought I'd read a bit about it. Looks like it should never be given to anyone let alone ALS sufferers.
Thought Irenes early balance issues were down to ALS but after reading what this drug can do I'm now not so sure. Can't rewrite history but we can influence our future.

John
John, dependencies build up over the years. So it is not always a good idea to quit a drug cold turkey, especially the poisons that are prescribed by doctors and taken regularly. The withdrawals symptoms can be severe. This is something that my wife is experiencing first hand with Effexor. Don't trust any doctor-prescribed medicine. Use Google to research the drug and discontinue use at the slightest hint that you may be suffering from one or more of the published side effects.

Furthermore, stay away from any psychoactive drug, especially the anti-depressant known as Effexor. It's a killer of people, a nasty poison. It is known for inducing pulmonary hypertension, not only in patients but also in their newborns. Yet, it continues to be prescribed routinely even though there are several class-action and individual lawsuits in the works. The industry does not care because there is a lot more money to be made in selling the drugs with FDA approval than they can lose in a bunch of lawsuits.

Louis
millstones
Posted: Monday, February 06, 2012 7:33:50 PM

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louis,
I read everything I could find on the drug and how it works but couldn't find anything that said you would become dependant. Irene has had over 24 hours without it and nothing unusual has happened and the leg cramps have stayed away. She has gone to sleep without much trouble.
She has been back on OSC since last Friday and is getting stronger and steadier all the time but this will disappear gradually in the off period (down to 12 days). She is not keen on the continous dosing having had abnormal liver function readings last August due to riluzole apparently. Another overrated product of the pharmaceutical industry.

Everything going well with your wife at home?

John
ENV
Posted: Tuesday, February 07, 2012 12:24:09 AM

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Liver issues with Riluzole are something to watch for, and don't affect the majority. Unfortunately no drugs are 100% without side effects (not even "natural" supplements). If Irene is having a bad reaction to quinine (a relatively safe drug in use for a century), there are other anti-cramp drugs to try. i think Baclofen is one but I am just going off memory and could be wrong.

-- Le Meilleur Vin Avec Les Meilleurs Amis --

The comment above is my personal opinion. I do not represent ALS-TDI
ichisan
Posted: Tuesday, February 07, 2012 12:37:42 AM
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millstones wrote:
louis,
I read everything I could find on the drug and how it works but couldn't find anything that said you would become dependant. Irene has had over 24 hours without it and nothing unusual has happened and the leg cramps have stayed away. She has gone to sleep without much trouble.
She has been back on OSC since last Friday and is getting stronger and steadier all the time but this will disappear gradually in the off period (down to 12 days). She is not keen on the continous dosing having had abnormal liver function readings last August due to riluzole apparently. Another overrated product of the pharmaceutical industry.

Everything going well with your wife at home?

John
John, riluzole is one of those products created for the sole purpose of stealing the people's money. The same goes for WF10 and NP001, in my opinion. A simple, non-proprietary saline solution containing pure sodium chlorite would work just as well. Everybody knows this is true but they're all acting as if it weren't. But bad karma can be a bitch.

I'm happy to hear that Irene is doing OK after stopping the drug. You should investigate the side effects of every drug she's taking. If she decides to go on continuous dosing, she may choose to take 1/2 the dose she's on now and that would be less taxing on the body. Is she doing some oxygen therapy?

My wife is doing extremely well considering what she's been through in the last month. She is back at home and is now able to stay off the Bipap machine for a total of 4 hours a day. At the rate she's improving, we figure she'll be completely off of it by the end of the month. However, she'll continue with her daily blood-oxygen saturation treatment.

All the doctors at the hospital are amazed at her recovery. They all thought her breathing could only get worse because of her ALS and scolded her repeatedly for refusing to get a tracheotomy. They can't believe that she can breathe for several hours a day on her own. And she's getting better at it every day.

Louis

PS. I'm still trying to find a way to continue with my IVSC safety trial. A friend of mine who used to be a medic in the military many years ago agreed to attach a PICC line to my arm. This way, I'll be able to inject the saline + sodium chlorite on my own. Even though I am positive that IVSC is safe, I want to do it for 6 days straight to set my wife's mind at ease. I ain't giving up.
ENV
Posted: Tuesday, February 07, 2012 3:23:20 AM

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By all means let's stop allowing people who spend years and huge sums of money in development from receiving any return on that investment.

Tell me Louis: Do you work for free?


-- Le Meilleur Vin Avec Les Meilleurs Amis --

The comment above is my personal opinion. I do not represent ALS-TDI
Nemesis
Posted: Tuesday, February 07, 2012 4:00:26 AM

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You have to look at the larger picture and observe the current trends in pharma development ENV.

Traditional big pharma is down-sizing their inhouse R&D, the most recent example being AZ who cancelled research in neurology. The new strategy in big pharma is to procure promising leads from small-size biotech. This is an evidence for that science and discoveries are being dissiminated from large research centers down to individual researchers. And what is to say that science of the future isn't further dissiminated from proffessional scientists down to individual citizens or virtutal networks, e.g. like this one?




Don't just ask what scientists can do to speed up the solution for ALS or when they will do it, instead ask yourself what you can do right now to solve ALS asap.
ENV
Posted: Tuesday, February 07, 2012 4:52:39 AM

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Ability to pay.

And our OSC project is very far from science. At best it can be an indication whether further research is warranted. In this case we did it backward to try to piggyback on an established official trial.

If medicine is reduced to groups of citizens randomly trying anything off the Internet we are truly doomed.

-- Le Meilleur Vin Avec Les Meilleurs Amis --

The comment above is my personal opinion. I do not represent ALS-TDI
Nemesis
Posted: Tuesday, February 07, 2012 6:12:00 AM

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ENV wrote:

If medicine is reduced to groups of citizens randomly trying anything off the Internet we are truly doomed.


You have just refuted the fundamental processes of human evolotion and development as we know it.

That would be hilarious in Monty Python sketch coming from someone who's been doing the opposite, but it isn't at all so in reality due to the tradgedy involved.

Science is nothing but trial an error and "groups of citizens randomly trying anything off the Internet" is more likely to speed up development than anything else that has happened to the human race since the industrial revolution.

The only problem and the fundamental challenge is to hash out the important advancements and findings from all the background white noise, and that's where we need to focus our efforts.

You have personally spent a significant time of our decline trying to do just that and ended up non-randomly trying, for example ursodeocycholic acid and activated chlorite.

But now once you have become permanently bed ridden and on life support you are advocating that other people (without life support) should confidently and patiently outsource human evolution and development to a number of specialists.

Yeah right.



Don't just ask what scientists can do to speed up the solution for ALS or when they will do it, instead ask yourself what you can do right now to solve ALS asap.
millstones
Posted: Tuesday, February 07, 2012 7:14:19 AM

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ENV wrote:
Liver issues with Riluzole are something to watch for, and don't affect the majority. Unfortunately no drugs are 100% without side effects (not even "natural" supplements). If Irene is having a bad reaction to quinine (a relatively safe drug in use for a century), there are other anti-cramp drugs to try. i think Baclofen is one but I am just going off memory and could be wrong.

Thanks for the advice. At the moment I am not convinced Irene needs anything for cramps. She started with cramps 18 months ago and the quinine sulphate was supplied and stopped the pain. She has continued with it daily ever since. I thought we would try without and if the pain returns then look for alternatives. The quinine has just come on repeat presriptions and i am not sure whether or not continuous dosing was needed.
She is on day 3 without and seems unconcerned so she may have progressed beyond needing the drug or any other for leg cramps.

John
millstones
Posted: Tuesday, February 07, 2012 7:30:50 AM

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[quote=ichisan]John, riluzole is one of those products created for the sole purpose of stealing the people's money. The same goes for WF10 and NP001, in my opinion. A simple, non-proprietary saline solution containing pure sodium chlorite would work just as well. Everybody knows this is true but they're all acting as if it weren't. But bad karma can be a bitch.

I'm happy to hear that Irene is doing OK after stopping the drug. You should investigate the side effects of every drug she's taking. If she decides to go on continuous dosing, she may choose to take 1/2 the dose she's on now and that would be less taxing on the body. Is she doing some oxygen therapy?

I am not a fan of riluzole but it was the only thing the medical profession could offer that might make any difference.

Continuous dosing I think might be an option maybe starting low and building. Irene is apprehensive and it's her body, her decision.
She doesn't have a bi pap at all and breathing hasn't been an issue. I'm interested in what you have to say and watching how it goes. I think Irene is fairly stable but would like to see some regeneration( wouldn't we all?). Supplements I don't feel will do it but maybe extra oxygen could. I have just been talking to a friend who is recovering from bowel cancer but they cannot stop his bleeding from his bowel following the damage to the lining of the bowel during treatment. One "specialist" offered an experimental treatment which involved pumping argon gas into the bowel and igniting it. The subsequent burn would corterise the lining and stop the bleeding. The big risk was if they failed to remove all faeces before ignition then any remaining could explode and puncture the bowel wall. I am sure dee bee can find a video of this on you tube.
He declined this procedure and they have offered instead to include him in a trial using a decompression chamber everyday for 3 weeks. Unfortunately there is a placebo arm so he might be just breathing air rather than oxygen for 3 weeks. He is inclined to go for this. I suggested he got some sodium chlorite to improve his oxygen levels.

Glad your wife is improving. It must have them scratching their heads as most people know ALS goes only in one direction and recovery isn't in the definition anywhere.

Good luck with everything.

John
DeeBee
Posted: Tuesday, February 07, 2012 12:18:16 PM

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Folk medicine will not do anything for MND, but there is plenty of evidence in favour of 'collaboration'. We can raise awareness, funds and donate body fluids/parts to labs, participate in trials etc.

There are also quite a few opportunities to submit 'ideas' to research departments. But these would need to be supported by letters from enthusiastic professionals. A hunch or dream of efficacy would not wash, IMHO.

The SMND Research Advisory Group is appealing for new members. Anyone who would like to find out more about what role they can play should contact Emily Goodall at: E.Goodall@sheffield.ac.uk

We should give the following a rest..........

"Eye of newt, and toe of frog,
Wool of bat, and tongue of dog,
Adder's fork, and blind-worm's sting,
Lizard's leg, and howlet's wing,--"


http://www.mndsouthyorkshire.org/page10.htm

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