I am 66 and have been taking quinine since 1978. This year my employer changed the pharmacy which handles our prescriptions. This new pharmacy refuses to fill my prescription for quinine because I am not taking it for malaria, the only FDA approved indication. There is an appeal process, but I need to provide medical rationale and documentation for my use of quinine.

I can do a gogle search and find many secondary references which mention the use of quinine for MC.

1) Has anyone had a similar experience in being turned down by a pharmacy?

2) Can anyone suggest a useful reference or other resources that could be helpful as I prepare my appeal?

Many thanks,
Glen W.

Type of Myotonia: Thompsen's

Country: US

Glen,

If you do a search you will find many references to treating myotonia with quinine, but most were in the 1930s and 1940s. It has been used for so long that there are no studies being done currently.

This is one of the most definitive works on the myotonias done in the past few years.

http://dare.ubn.kun.nl/bitstream/2066/74857/1/74857.pdf

If you go to page 22 of the PDF, you'll find a section labeled "treatment" which mentions quinine. I would think that would be adequate if you print off the first few pages plus that page.

Quinine is considered the least effective treatment for MC these days, but for some it still works very well and has fewer side effects than some of the newer drugs.

Jan

Type of Myotonia: Thomsen's

Country: USA

Jan,

Thank you for the link to the publication by Trip.

Quinine has always worked well for me (and for my brother who is deceased). Many, many years ago I tried a couple of other drugs (don't remember which), but as you noted, the side effects were more tolerable for the quinine. In those days quinine was available over-the-counter.

Best regards,
Glen

Type of Myotonia: Thompsen's

Country: US

Glen:

Could the doctor talk to them perhaps?

Type of Myotonia: Becker

Country: USA

My son has been on quinine sulfate for about 7 yrs and he has not had a problem getting it filled by the pharmacy & having the insurance cover most of it. It has been very expensive even with insurance but just last month they came out with a generic for the Qualiquin which is much cheaper. He has tried the other medicines and did not like the side effects.

Type of Myotonia: Thomsen

Country: USA

That's great news about the generic. I did a quick check on GoodRX.com and it's showing 30 capsules of 324 mg generic for $87 at Walgreens. The lowest price on Qualaquin is showing $217. Quite a bit of difference!

Quinine is the oldest and probably the safest treatment for myotonia. The main side effect to watch for is tinnitus and potential hearing loss over time. It is contraindicated if you have a G6PD deficiency (an enzyme defect found primary in men of Middle Eastern or Mediterranean descent). Even small amounts can be effective...I would open a capsule and just use a portion a couple of times a day.

Many people got relief with just tonic water in the US until they made manufacturers reduce the amount of quinine that was allowed to be used. It was very popular in regions where malaria was common and it relieved leg cramps. Now it's limited to 83 mg per liter of tonic water. However it is quinine hydrochloride rather than quinine sulfate so it may be an option for people who have a sensitivity to sulfa drugs.

Jan

Type of Myotonia: Thomsen's

Country: USA