I am 29 years old and was officially diagnosed at age 15 with MC, although the symptoms had been present long before. Immediately, the neurologist prescribed Quinine. However, I was initially hesitant knowing that I would be on the drug long-term. I played a lot of sports (unsuccessfully) in high school. Then, in college I decided that I would try the drug as I realized that I was starting to not participate in athletic activities even for fun and I was starting to schedule the classes which were on the 1st floor of the building so I did not have to walk up the staircase. Basically, I was really stiff, it was worsening, and I was becoming more self-conscious about it. I wasn’t active and didn’t want to be active. As a result, I went back to my original neurologist who prescribed the Quinine and took him up on the offer.

This was ’01; so it has been about 8 years that I have been on Quinine. There was an initial dramatic improvement that has continued through to the present. I am active most days of the week and feel very fluid in my movement.

I see that this topic was touched up on in earlier posts – about one year ago the FDA did two things – 1) proclaimed only one manufacturer can make Quinine and 2) the drug cannot be used for general stiffness, cramps, etc. As a result, the price increased and Quinine was much harder to get. Two criticisms of the FDA here. First, this seems like a kneejerk reaction. I researched Quinine and there have been some deaths due to arrhythmia in the heart. However, it was only seven deaths since the 1970’s. My doctor and I have been conducting periodic EKG’s and other heart tests to ensure I am still ticking smoothly; so we have been monitoring the situation. In addition, seven deaths in 30 years does not seem pervasive. Getting in a car and driving is really dangerous; living and working in DC is less dangerous but still outweighs the risks of Quinine. So, I see this as a kneejerk reaction by the FDA and doesn’t seem to follow logical cost-benefit analysis. Second, if we are allowing a company to develop and market the drug for the original purposes (malaria), why restrict it to only one? This has reduced the availability on the market and increased the price. This is tangential to my overall post, but when I read Milton Friedman for the first time, I thought he was a little crazy for likening the FDA to a quasi-socialist organization, but this has me thinking in a whole new direction.

About one year ago (after the FDA decision) my troubles started as the drug was harder to find, much harder to get and pricier. First, my doctor prescribed the drug as he had done every year (enough for a one year supply). Initially, I was shut down by my healthcare provider as I did not have an appropriate use for this drug (again, right now only malaria counts). We appealed to the Insurance company; they did allow me to use it with some caveats so we were able to get a little headway, but there are two things that make this extremely complicated. One – they will only allow me to buy 42 pills every 24 days. I was prescribed two pills a day; as a result, I have 21 days worth of pills, but I cannot refill the prescription until day 24, which leaves three days where I am not covered. Second – they require prior authorization from my doc’s office before I pick up the prescription. I am not sure why they need to re-verify with the doctor’s office; it seems like a prescription would be enough. To complicate the matter, sometimes there is a lag time as I cannot refill the prescription until day 24. then sometimes there is a delay with the pharmacy or the doc’s office getting the actual authorization. I have been able to creatively schedule my Outlook to give me reminders to follow up with everyone and make sure I am on tap for appropriate pick up days. So, it’s a hassle, but other people have more legit issues, so I am will to let the administrative piece. The thing that ****** me off is the 21 day supply for 24 days. I have not been able to get an answer on who owns this ridiculous policy – the pharmacy passes me to the PBM, the PBM passes me to the insurance company, and then the insurance company passes me back to the PBM. I have been able to take one pill on the weekends instead of two which then stretches the pills out, so I do no have to take a three day break. But this situation is so ridiculous and I have a theory that some low-level bureaucrat at a bloated insurance company had fat fingers and made a typo of ‘24’ instead of ‘21’ because this is the only theory that is logical. The unfortunate thing is that I have spent hours upon hours with the PBM and the insurance company, but to no avail. I cannot seem to get this changed.

I am curious to see if anyone has similar stories or ideas.

I realize there are alternative medications, but Quinine seemed the safest and most time-proven for long-term use. And, so far, I have not had any side effects.

Thanks for setting this website up. I am in DC and was thinking about trying to reach out to other MC sufferers when I ran into these complications. This is great for a broader audience, but if there is anyone regionally close, I would be happy to try to get a group of people together for stories, ideas, etc. We can meet for happy hour, lunch, or create the world’s most dysfunctional 40 yard dash at a local park.

Ethan

Hi Ethan - I think the FDA is about as far from "socialism" as you can possibly get. I believe it is a tool of, and in the pockets of, the large pharmaceutical and chemical companies, and is about as free-market capitalistic as a supposedly impartial oversight and regulatory department can get. Have you not noticed that neither tobacco nor alcohol are "illegal, addictive substances", yet both are clearly documented addictive and toxic substances, and are known to cause deadly illnesses? But quinine, which has been used for "fevers" such as malaria, and other conditions since the mid-1600's (!!!) is now suddenly "re-marketable" and therefore potentially profitable, and so the exclusive right to produce this VERY generic substance is now re-granted, no doubt as a favor or political payback, to one of the large lobbies in DC. That, my friend, is NOT socialism, which would disseminate a beneficial medication as part of the support for greater good. That is pure free-market capitalism at its very worst - when you realize the lost profit on a common commodity, you repackage it, get a trademark, and then price it at whatever the market will bear. Lois

I do agree with you that big pharma has some influence with the FDA...and I have had many thoughts of the corruption that could've taken place to reduce the number of Quinine providers from four to one. However, that is not the free market at work. That is classic government interference with the free market. I think that we agree on all of the effects of the FDA, but disagree on the causes. The government established an entity that has control over a marketplace. In addition, the government did not set up enough obstacles to preclude rent-seeking behavior from having incentives. I don’t think that is capitalism at all.

Ethan,

I've been really disgusted by the whole manipulation of quinine on the US market. If you want to have your doctor write a prescription for enough per month to get you through without having to cut back several days, I would recommend CanadaDrugs.com in Winnipeg, Manitoba. You can order online after they get the prescription and the 300 mg tablets of quinine sulfate are about $.40 each. They are a certified Canadian pharmacy - I would be very careful about some of the offshore type businesses and I would never use someone who doesn't require and verify a prescription.

I order my thyroid hormone medication from Canada and have been pleased with the service and quality - I can't tolerate the dyes and fillers in the American made products so I didn't really have a choice. I only had one incident where customs opened the package and the bottle, then sent it on and expected me to take it after it was handled!? I have to pay for it out of pocket but it's worth it to me. When I first started taking thyroid it was $2.00 for a bottle of 100. The same stuff is now $90.00 for 100. Unbelievable!

Jan

You know, it is time to go meet with your Congressman, while he is on vacation and let him know your situation. This problem requires legislation. It is outrageous that Quinine is regulated in this manner and much more dangerous drugs are being perscribed like candy.