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Re: Quinine Sulfate Status

Trudy,

Your doctor is probably concerned about getting sued or reprimanded if he continues to prescribe it for myotonia. The FDA first issued a warning in 2006:

Unapproved Qualaquin Use is Risky - WebMD

In 2010 another warning was issued by the FDA. Prescribing it for myotonia congenita is considered an off-label use now:

Stahl's Essential Neuropharmacology

Because of the dire warning now on the product insert, your doctor is probably very nervous about prescribing it:

Qualaquin Product Insert

I think several other myotonia medications are also prescribed off-label, but they seem to be more accepted for some reason. Some options for you:

mexiletine (Mexitil)
acetazolamide (Diamox)
flecainide (Flecaine)
lamotrigene (Lamictal)
phenytoin (Dilantin)

I would not recommend carbamazapine (Tegretol). It works for some people but has a much greater potential for psychiatric side effects, especially in younger people.

Jan


Type of Myotonia: Thomsen's

Country: US

Re: Quinine Sulfate Status

I know every medicine has its bad side effects, but if say quinine and Mexitil were the same price and were equally available which one would be the best choice for myotonia. I am trying to figure out if I should just try to find another doctor who will prescribe quinine or is mexitil really a better safer drug choice (if it works).

Type of Myotonia: Thomsen

Country: USA

Re: Quinine Sulfate Status

That's probably a good question for a pharmacist. If you have a university medical center nearby then you might want to talk with a professor in the pharmacology department.

My personal preference if I were to take medication would be Mexitil over Quinine Sulfate, but I have a genetic condition that makes quinine very dangerous for me because of red blood cell destruction. I've only had one dose and was so sick I was out of it for days.

There are very few people who don't show at least some response to Mexitil but you do need to get a baseline EKG and regular monitoring, especially the first few months. One of the biggest concerns with quinine is the risk of permanent hearing loss over time.

Hope you can find a pharmacist who will help you compare the two. It should be fairly easy to find a doctor who will prescribe the quinine sulfate since your son's been on it for so long.

Jan

Type of Myotonia: Thomsen's

Country: US

Re: Quinine Sulfate Status

Thanks so much for the info. I love this forum. It really helps to know I can bounce different ideas off of people on this forum who actually know what I am going through & talking about. I think I will try to get my son to try the Mexitil again since I don't think he was up to the right dose to make a difference before he stopped. The quinine even has a generic is still terribly expensive.

Type of Myotonia: Thomsen

Country: USA