Anyone else can't get QUININE for leg cramps??

StephN · 11-16-2007, 04:05 PM

Regarding QUININE SULPHATE.

I took my script to my local pharmacy only to get a sheet of paper explaining why I can't have it filled. You may know already, but in case not here is what it said:

"We can no longer fill your Quinine Sulphate prescription because the FDA has removed it as an easy approved drug in early 2007. Most pharmacies have exhausted their supplies on hand and can't get any more.
Qualaquin is now the only quinine product approved and it is specifically labeled "Not to be used for leg cramps: only for malaria."
Your physician may still legally prescribe the quinine brand, Qualaquin, if he/she has reviewed the new warning, and believes the benefits outweigh the risks to your health. Please keep in mind that most insurance companies will not pay for Qualaquin, unless it is written to treat and prevent malaria. It will cost over $4 dollars a capsule compared to pennies for the old generic product.
You may wish to talk to your physician about alternative prodicts, sich as prescription Requip, Gabapentin, Verapamil, Diltiazem; or over-the-counter products such as Magnesium, B Complex vitamins, or Hyland's Leg Cramps Formula - a homeopathic natural source of quinine - as possible alternative therapy."

I am trying the Hyland's and I am still getting the cramps.
What are the rest of you doing??
Yes, that was FOUR DOLLARS a pill. Is this a royal rip off or what!?

Tomorrow I start back up seeing my massage therapist as have found that really only regular massage therapy reduces the leg and hand cramps.

madubois63 · 11-16-2007, 05:04 PM

Steph - I have a friend that is a pharmacist. He has posted on another site about tonic soda having enough quinine in it to help the cramps. I'll forward your post to him and either he'll post or I'll post his reply.

Lolly · 11-16-2007, 05:19 PM

Steph, I take 400 mg. magnesium daily, on my onc's advice. I started it several years ago when back and diaphram cramps from Navelbine became unbearable, and felt relief within a couple of hours. My onc wanted me to try magnesium first, then if it didn't help he would have written me a script for Quinine.

I discountinued the magnesium after my last course of Navelbine earlier this year, but just started it again this week as the Taxotere/Xeloda combo is starting to cause cramps.
I still get occasional, mild cramps when taking magnesium, but nothing like they were.

<3 Lolly

Lolly · 11-16-2007, 05:41 PM

P.S. I'm lucky that magnesium works for me so far, but it is so aggravating that sometimes we can't get effective remedies for our complicated health concerns without jumping through hoops or paying through the nose! AARRGGG.

11-17-2007, 06:03 AM

Hi Steph,

I'm curious. Did the FDA remove the drug as being unsafe. And if unsafe then how can one get it if one pays $4 a tablet. I agree an incredible ripoff. Sorry and hope you find a reliable substitute.

madubois63 · 11-17-2007, 10:11 AM

Steph's suggestion of magnesium is a good one, but she also said she is one of the lucky one's where it works for her. I am on a very high dose of magnesium (1200 mg), and still experiencing the leg cramps. I just sent the link to your post to my friend Paul the pharmacist. He is on the West coast, so I don't know when he will be able to post; but I am sure he will have some good information for you.

ckeesling · 11-17-2007, 02:10 PM

Hi ladies,
I don't have problems with leg cramps so I can't confirm this information, but we have a medical column in our local paper and I believe he is in many major papers, but people are always writing in about sleeping with a bar of soap under your legs at night really helps with their leg cramps. I know it sounds kinda strange but hey maybe worth a try or try a homeopathic wed site to confirm. Oh, his name is Dr. Gott.....

Good luck and let us know if you give it a try....
Cat

Joanne S · 11-18-2007, 03:22 AM

What is the cause of the leg cramps? I have been getting them fairly regularly just lately.

donocco5w4 · 11-18-2007, 03:38 AM

My name is Paul and am the pharmacist in California Maryann mentioned.

Regarding Stephanies post on quinine for leg cramps, I am researching possible alternatives. Quinine has been used for years to treat leg cramps in fact there was a time I was getting them and used it myself. I used to sell 100 of the Quinine Sulfate 325mg capsules for abput 4.00.

The attitude of the FDA towards Quinine and legs cramps is that Quinine has been associated with thrombocytopenia (low platelet counts and this makes it too dangerous for unsupervised over the counter use. So they have recalled the generic Quinine Sulfate. There isnt anything we can do about this. The question is how can we help your leg craps?

The suggestion of trying tonic water is not a bad one. Ive heard of situations where that worked. Tonic water is very dilute but there is no harm in trying it.

One suggestion that came to my mind is the drug Quinidine which is an isomer of Quinine. You have to be very careful with Quinidine as it affects the heart. Its main use is to treat cardiac arythmias but to affect the heart you have to have a certain blood level of the Quinidine. If you were to take 200mg Quinidine 4 times a day you will reach the cardiac therapeutic blood level of 2-5 micrograms per ml and affect the heart, but if you took 200mg Quinidine at bedtime to prevent leg cramps I doubt this is will be a problem. As the half life of Quinidine is about 6 hours, one tablet at bedtime is very unlikely to lead to accumulation of the drug to a blood level that would effect the heart. Of course Quinidine levels could be measured to ensure safety. Speak with your Oncologist. If the cramps are incapacitiating it may be worth a try. Im assuming you get these craps at night where one Quinidine tablet at bedtime would suffice. Quinidine Sulfate comes in a cheaper generic. Ultimately it will be up to the physician if you want to try this route.

Paul

Paul

mke · 11-18-2007, 09:01 AM

You can get quinine sulfate 200mg tablets from Canadian pharmacies (with a prescription) but they aren't super cheap, run about .70 per tablet. Perhaps that could be a Plan B or C.

donocco5w4 · 11-18-2007, 11:12 AM

I didnt know that but it doesnt surprise me. Since it appears Stephanie lives in Seattle Wa going to Victoria British Columbia would be very easy. It would be possible to open a capsule an d only use part of it in tonic water when needed but this would taste awful. Quinine is the bitterest substance known and this bitter taste can be detected in concentrations of 1:100,000

Paul

Kim in CA · 11-18-2007, 11:22 AM

Steph,

Back when I was on Taxotere and for several months afterwards, I had terrible leg cramps. They were the type that were so bad that I would bolt out of bed and hop around the room trying to get my legs to loosen up. (This would go on several times throughout the night, pure misery!)

I had always heard that potassium was good for leg cramps so I gave it a try and started taking it at bedtime. The cramps stopped immediately. After I used that first bottle of potassium, I quit taking it to see what would happen and amazingly the cramps didn't come back.

Occasionally when I do one of my endurance rides and my legs have worked really hard, I will start to get the cramps in the middle of the night. When that happens, I just get up and take a pill, and within minutes the cramping goes away.

Anyway, that's what worked for me, and I really had bad cramps!

Kim

StephN · 11-18-2007, 02:06 PM

Thanks, ladies and Paul, for your various thoughts and suggestions. I had my massage yesterday and felt worlds better afterwards, had lots of knots here and there from all the stress and tension I have been under with my dad's passing. Had not seeen my massage therapist since mid-August!

My local supplements store is just across from where I get my massages so stopped in and took a look. Came out with a formulation of magnesium and potassium - 600mg of mag. Took one with dinner.

The good news - I got through the night without a SINGLE cramp in leg, ankle, foot or sometimes all three areas. Guess I will continue with the magnesium pill in the evening.

My problem stems from having taken Taxotere and then 6 months after that taking 27 weekly treatments of Taxol/Navelbine/Herceptin for mets. All those taxanes killed my deep tendon reflexes.

How many of you on multiple treatments have had any of your docs take the rubber hammer to your reflexes? Mine show very little response and that has been the case since the last few of the Taxol group. My nerves do "fire" and my balance improved over time (was a bit rocky during all that chemo - had to install grab bars in shower etc.).

Lolly · 11-18-2007, 08:44 PM

Steph, that's great! I didn't know about the potassium, maybe my potassium is low also and that's why I still sometimes have mild cramps; I'll look into a combo pill. How much potassium is in your supplement?

<3 Lolly

madubois63 · 11-19-2007, 10:39 AM

Just a warning about magnesium...It can give you gas pains and/or diarrhea. Because of the high dose of magnesium I take, I was given Manesium with protein. The protein helps and I do not suffer anymore. There is only one place that I know of to get Mag w/protein and that's on the web. If you want the information, please let me know and I will send it to you.

Kim in CA · 11-19-2007, 11:42 AM

Lolly,

The amount of potassium in my supplement is very small (99mg.) It doesn't take alot however to do the job. I went on the website where I purchase alot of my supplements (iherb.com) and was looking at their potassium supplements and reading the reviews. Evidently potassium isn't sold in higher concentrations, but it really only takes just one at bedtime, and for me, the cramps were gone!

As a side note...When I was at UW participating in the vaccine trial, they asked about any supplements I was taking. When I mentioned the potassium, the gentleman that took Andrea York's place (can't remember his name) raised his eyebrows and said "You mean you can get that over the counter". I didn't think much about it at the time, but later on got thinking that maybe I shouldn't just be taking it everyday. That's when I stopped to see if the cramping would come back. As I said before, it didn't and now I only need to take it occasionallly when I have really exerted myself and maybe gotten a little dehydrated.

If I feel my legs starting to cramp up, I will put a tablet under my tongue, and by the time I have walked back to the bedroom, the cramps will have started to subside. I then wash it down with a big drink of water and I am fine the rest of the night. What a difference it has made for me!

Kim

StephN · 11-19-2007, 12:34 PM

Hi again -
My Magnesium supplement has 198 mg of potassium or 6% of daily value. Most seem to have just 3%, even the "just potassium" supplements.

The brand I am using is Country Life, if anyone wonders.

Madubois - thanks for mentioning the other problems the magnesium can prompt. Since I take only one capsule with my meal, and always have protein, I think that should stave off any of the problems you mentioned. If not, thanks for the tip.

newgg · 11-19-2007, 02:37 PM

Hey,
Just the ordinary old tonic water worked for me.....did get the diet version and did not even have to add any gin !! But bet that would have helped as well.
Hugs, Bonnie

fauxgypsy · 11-19-2007, 03:09 PM

I had a very bad reaction to quinine may years ago, I ended up too weak to get to the phone and lost nine pounds that weekend. I have restless leg syndrome and since I have been having to take potassium elixir (my levels keep being low for some as yet unexplained reason) it does not bother me nearly as much as it used to. I have avoided taking Requip because of some of the possible side effects, and I am the queen of side effects. It is one of those drugs that was developed for one thing (Parkinsons) and is being used for another. I hope you can find something that works for you.

Leslie

http://www.askapatient.com/viewratin...58&name=REQUIP

I hope you can find some help. I have spent many miserable nights because of RLS and then my fibromyalgia flares up when i don't get enough sleep.

StephN · 11-19-2007, 04:59 PM

Wow, Leslie!
An allergic reaction to quinine! First I have heard of that, but I guess all of us can be allergic to something - just takes time to ingest that something.

I have only very mild restless leg and it is not all the time. So have not considered Requip.

Quinine water did not do a thing for me. My pharmacist said that there is not enough quinine in it to help someone with severe and chronic leg cramps.