AnonymousFebruary 8, 2007 at 11:44 pm
Nate has really bad muscle spasms and our regular doc prescribed Soma. That stuff had a really bad side effect on nate. He may as well have drank 12 beers, it was that bad. He was totally stoned.
According to some drug websites, you are not supposed to take it with Neurontin or Elavil, thus the side effects.
I asked his Ortho about Quinine since it seems to work for some here.
He gave nate a prescription for it yesterday.
His doc said it is one of the oldest and best for muscle spasms that has no bad side effects, like the others do.
He was also prescribed a mixture of Ketoprofen, DMSO and Lidocaine for his knee pain.
I had to have that mixed by a compounding pharmacy, one that can mix things but I got the Quinine at Walmart where we get everything else.
But just when we find something to help Nate’s muscle spasms, the pharmacist dropped this bomb on us.
My Walmart pharmacist told me that very shortly the FDA is going to restrict the use of Quinine. I asked her why.
She said that Quinine is not FDA approved for muscle spasms and it will soon be unavailable for that purpose.
Have any of you heard that? Where will we be able to get it then?
AnonymousFebruary 9, 2007 at 12:58 am
I was on Quinine for almost 4 years from1990 thru 1995 it was the only thing that helped with the leg cramps. Even back then, around 1995 I was told it was no longer going to be available for that purpose. Maybe it will only be a short time before it is approved again by the FDA. Good luck and God Bless
AnonymousFebruary 9, 2007 at 9:01 am
The fda is trying to put the kabash on any med or untested and unapproved treatment. that doesn’t necessarily mean you won’t be able to get quinine in the future, because it is used for other health issues. there are other benefits from this treatment. off label use is under the microscope on many herbs/meds, its a wait and see situation for many meds.
AnonymousFebruary 10, 2007 at 12:41 am
Quinine is in tonic water, but I don’t know how strong it is. Unfortunately some tonic waters also include artifical sweetener. ‘A nice little earner’.
I’m reminded that St John’s Wort was banned somewhere – it helps with depression. I can only imagine that they are banned – because they work. Thus a drug company could make good money from them, following American FDA approval.
Lavender will probably be banned soon – Monsanto can buy a patent for it (hopefully, not in any other country). They can also genetically alter it – and make a fortune selling it
Personally, I think that there’s other stuff that could do with being banned – not medicines, herbs etc that were in use long before Western-style medicine, FDAs etc.
AnonymousFebruary 10, 2007 at 1:16 pm
I tried getting Nate to drink tonic water with powdered drink mix for flavor but he couldn’t handle it so I asked his orthopedic about capsules. Nate’s orthopedic doc says Quinine is one of the oldest and best rememdies for muscle spasms. It amazes me that if it works so well, why would the FDA not just leave it alone.
Next they will be trying to prevent us from getting vitamins.
AnonymousFebruary 10, 2007 at 1:47 pm
Hi fellow San Diego Countier…
I remember when I have gone on safari’s to Africa, quinine was used for Malaria.
What difference does it make, if your doctor prescribes quinine for Nate, quinine under the possibility that Nate has Malaria, (of course not being true), or if he prescribed it for muscle spasms, that you say the FDA is cancelling the use of quinine for.
Perhaps your doctor can prescribe a “little white lie”…lol.
At the moment, I am also dealing with very bad muscle spasms, especially in the temple/eyes/face areas, and legs. I had been on Felxeril 10mg three times daily for the past 3 years, which had been working well. But now, no longer. I asked my doctor if perhaps my body had gotten too use to it, and he told me no, it was the progression of the disease. So, he said the Flexeril dose was at it’s highest, so added Valium 2mg to be taken with the Flexeril each time through the day.
I have been on that for about 1 week–so far so good. I have anemia with the CIDP fatigue, so I am tired anyways through the day. But the two meds together have not made me any more tired than usual.
AnonymousFebruary 10, 2007 at 2:12 pm
We had trouble finding Quinine at the first Walgreen’s we went to. The pharmacist told us that since it’s such an old drug and is really just used for people undergoing kidney dialysis, it doesn’t generate enough money to justify large pharmaceutical companies wanting to supply it. The pharmacist made a few phone calls and did end up finding a CVS nearby that still had it in stock. However, when we got there and gave the pharmacist Ben’s script, she didn’t have the entire supply. She was able to get the rest of it though, and we went back for it a week later.
I also called and spoke with a different pharmacist at Walgreen’s, and she called back later to let me know she was able to have Quinine delivered to the store and that it was now in stock.
Quinine absolutely does help with muscle spasms. I’m not a doctor and normally wouldn’t make a statement like that, but I’ve witnessed it first hand with Ben when nothing else was helping.
AnonymousFebruary 10, 2007 at 11:35 pm
Re quinine. Nate’s Mum said “It amazes me that if it works so well, why would the FDA not just leave it alone”. But that is surely why they would intervene. If it didn’t work it would not be a possble money spinner for someone.
Nate’s Mum also said “Next they will be trying to prevent us from getting vitamins”. Well, they are probably working on that and I am not trying to be funny. Especially as some vitamins, taken in large doses – as many people do – are detrimental to your health. An example would be:
Beta carotine – found in leafy veg and carrots – it protects against the likes of lung cancer. Yet, taken in large doses regularly, it can promote llung cancer – this was discovered 8 years into a study.
Again, Vitamine A in large dos regularly is not a good idea.
AnonymousMarch 3, 2007 at 8:17 am
i got a letter from my insurance company telling me that it was not going to be available any more. the fda was pulling it because of problem people had when they were on it. i called my neuro and she is looking for a replacement for me. she told me that quinine was found to help muscle cramps but it was 1st made for other issues. neurologist use it for the cramps.
i hope i can get it refilled. i am out today.
AnonymousMarch 3, 2007 at 12:40 pm
I went to Walmart yesterday to refill Nate’s meds and the pharmacist told me I can’t get Quinine anymore. She says they are not allowed to refill it now.
She says you can only get the type that is for Malaria now and that Nate’s doc will have to give us a prescrip for something else.
Our doc tried Quinine because other muscle relaxants react badly with Neurontin. They make him drunk.
Now I’m not sure what Nate can do.
AnonymousMarch 4, 2007 at 2:46 pm
Nate sleeps ok, he uses Ambien. Its just during the day that he gets a lot of muscle spasms especially in his back. It really bothers him a lot. He uses the heating pad sometimes or just takes some Vicodin.
His doc said that any muscle relaxant would make him drunk as long as he’s taking Neurontin.
He doesn’t need that, especially if he needs to do any standing up or walking.
He falls pretty easily still.
We will be seeing his Ortho soon. I will ask him what he suggests we do now that we can’t refill the Quinine.
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