posted
Does anyone have any ideas/suggestions on where I might get the Rx Coartem (US)/ Riamet (Europe) from?
My local drug store said they contacted the company that supplies/manuf. it in the US and it is on "permanent" backorder.
I really wanted to try this as I am running out of options and mepron is totally out of the question right now (too expensive).
I did find one company in Canada that says they have it in stock but I dont know anything about them.
I also found a site that claims they have meds without a Rx being needed.??? I dont know where this company is and am very skeptical about this.
Everytime I try to google to get info I can not find anything on these companies.
Please anyone with any advice or ideas I would greatly appreciate it.
God Bless,
K (:
Posts: 423 | From Virginia | Registered: Nov 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's really bizarre... I'll have to give this some thought & see what I can find when I have a chance.
I posted some alternatives on the other thread - Cheapest treatment for Babesia?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Try calling the company yourself to check on this. Or try from a different pharmacy, just to make sure that this is true (not saying that it isn't).
I did two rounds of it in Nov. & Dec. The first round knocked me to the couch for a week! ANd helped a lot. The second round didn't do much.
Otherwise, get it from Canada. It's worth it in my experience---although everyone's experience is different.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Definitely take the prescription to a few different pharmacies. I was told it was impossible to get at Rite Aid but then another pharmacy had it for me the next day.
Pharmacies use different wholesalers so I think it depends on the wholesaler.
Good luck!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Pocono Lyme
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Tried to send you a PM but your mailbox is full. If you're still looking PM me.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I ran in to the same problem. Found it at Gideon's Drugs, a compounding pharmacy in NYC. (212)575-6868. Just fax them your RX and a credit card number. My son's insurance, Medicare did not cover it. They are very nice and very efficient. Take Care, Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I was able to get Coartem at Walgreens. They had to order it, but it came in the next day. Have you tried them?
Posts: 4681 | Registered: Oct 2000
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posted
Thanks for all the suggestions. Yes we tried calling the company but it is on backorder. I tried Gideons but they are closed..I will try back Monday.
Walgreens is where I get most of my meds from...they are the one that orginally said they could order it but now can't.
If all else fails I will try the Canada Drugs....I believe they have it..I just wanted to make sure they were a reputable company before sending so much money. I've read so many stories about "rip off" companys.
Again, thanks all (:
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
Thanks for all the suggestions. Yes we tried calling the company but it is on backorder. I tried Gideons but they are closed..I will try back Monday.
Walgreens is where I get most of my meds from...they are the one that orginally said they could order it but now can't.
If all else fails I will try the Canada Drugs....I believe they have it..I just wanted to make sure they were a reputable company before sending so much money. I've read so many stories about "rip off" companys.
Again, thanks all (:
Posts: 423 | From Virginia | Registered: Nov 2009
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Sammi
Frequent Contributor (1K+ posts)
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posted
Karen, I am sending you a private message.
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minoucat
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posted
We use CanadaDrugs.com. They've been excellent. The Coartem is shipped from the UK. Allow 2 weeks for delivery (because of going through customs).
CanadaDrugs.com checks out as reputable with all the resources I could find to check such things with -- it's licensed with reputable organizations, and gets a clean bill of health from PharmacyChecker.com, BBB, and a couple of other sites (can't remember them at the moment but you can google, looking for complaints and reviews). They list the groups they're certified with (like Manitoba Pharmaceutical Association); I went to those sites independently and checked, and it all seems to be on the up and up. I actually spent more time checking their cerification than I did checking that of the home-town pharmacy I use regularly.
If anyone knows differently, please post.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
liz28 Unregistered posted 07-08-2006 06:06 PM ________________________________________ I've been symptom-free over a month after having a babesia-like illness for six years. I used a combination of chloroquine and primaquine. I took three 3-day courses of chloroquine over a 3-week period, and pulsed primaquine for three months.
I was on mepron over a year, and it only held the babesia in check, without ever curing it.
My personal opinion is that babesia is not like Lyme disease, a slow-growing organism that takes months to kill off. Instead, it seemed more like plasmodium vivax, or relapsing malaria. Malaria is treated with combinations of drugs that clear the active form of the organism from your bloodstream quickly, and a dormant form hidden in the liver over a period of weeks or months, depending on how well you tolerate the "cyst buster" malaria drug, primaquine liz28 Unregistered posted 07-25-2006 02:11 PM ________________________________________ I used a combination of chloroquine and primaquine. Before using this treatment, I was on plaquenil for two years, and found it useless, and mepron + ketek + artemisinin for over a year.
Mepron was able to suppress the babesia symptoms temporarily, and at one point, I thought I was in complete remission, and started gym training again. Then I relapsed with a much more drug-resistant generation of babesia, and lost several more months.
I started out taking 15mg base of primaquine on a 4-day-on, 2-day-off pulse. I got a G6PD deficiency test from a travel doctor before starting primaquine, and went through a harsh two-week herx at first.
After two months, I cut back to 30mg base of primaquine per week, and took three courses of chloroquine. The dosage for chloroquine was as follows:
Day 1 300mg twice per day Day 2 300mg once per day Day 3 300mg once per day
You need to give yourself a break of at least one week between chloroquine courses, because it has a low overdose threshold and builds up quickly in your system. It is usually taken once a week in tropical areas to keep from catching malaria--although in places where people take it all the time, malaria has of course built up considerable resistance. It's still new to the United States, however.
Most Lyme patients seem to believe that most bacteria act like Lyme does, and that they will require months and months of treatment in order to be cured. But babesia is much more like malaria than Lyme, and malaria drugs have to work in two ways: they must clear the active form of malaria from your bloodstream immediately, so you don't die en route to a hospital, and they must remove any drug-resistant dormant bacteria. Malaria is notorious for going into dormancy and then relapsing years after you think you are cured.
When I took primaquine, I had severe side effects the first month, and also experienced a Lyme relapse for another month. Then primaquine ceased to have any effect.
When I started on chloroquine, I was terribly worried I'd run out and hoarded a big stash, expecting to be on it for months and months. My babesia symptoms went away about two hours after the first dosage, which is exactly how a malaria drug is supposed to work.
The babesia symptoms stayed away at first, then came back after a few days off the first chloroquine course. I used mepron to temporarily control them, took a second course, had a much milder babesia relapse after a few days, took the third course, and so far have been okay. Here's hoping!
Lymetoo used quinine for several years, and quinine would have been my next drug of choice had chloroquine not worked. And there is always a chance of a relapse. So my babs-free summer has been spent aggressively researching a transition into a higher paid version of my job, so that if there are any further babesia problems, I can just hop on a plane to a tropical country where they take this disease more seriously. The only thing worse than being disabled for six years with babesia is finding out it could have been cured in two months.
I'm sorry to say that I still have a mild form of Lyme, and cannot yet go off maintenance without relapse. But the symptoms are far milder, and I can work full-time, so the next goal is to earn enough money to just pay for IV rocephin out of pocket in a year or two. With no co-infections left, the IV might actually work this time around.
Also, two noticeable effects of this babesia treatment were that I lost ten pounds and cut a minute and a half off my mile on the track. If that doesn't convince you to check this out, nothing will. liz28 Unregistered posted 08-15-2006 09:22 PM ________________________________________ I've been symptom-free for babesia for almost three months but took 300-600mg per day of Nutricology artemisinin for over a year. It worked very well as a temporary suppressant when taken daily. It also seemed just as strong as the artemisinin in Riamet.
I got better on chloroquine and primaquine. Mepron worked well at first, but I kept relapsing and after a year it was almost totally ineffective. liz28 Unregistered posted 08-19-2006 12:10 PM ________________________________________ Hi, Dave. Always love your posts, but hope to throw in an alternative explanation on this one.
Supposedly, artemisinin works well because it immediately lowers the amount of active malaria in the body, but only on a temporary basis.
In drugs like Riamet, two malaria drugs are taken at once, artemether and lumefantrine. The artemether lowers the malaria levels right away, so you don't die before the second drug has a chance to kick in. It also has an effect on malaria strains that have developed resistance to chloroquine. However, it has a short elimination half life, which limits the ability of malaria to develop resistance to it, but also doesn't allow it to stay in your body very long. Here's a Novartis website on Riamet:
Artemisinin derivatives have a short elimination half-life (2-3 hours), which means that they carry a smaller risk of developing resistance. The main drawback of the short half-life is that it results in substantial recrudescence if artemisinin derivatives are used alone for less than 5 days. Therefore, artemisinins are commonly used in free combination with other antimalarials.
Furthermore, a fixed combination of two antimalarials offers significant advantages over the free combination of such drugs. Firstly, it facilitates compliance, and secondly, by preventing the patients from taking either drug alone, it helps to prevent the development of resistant Plasmodium strains.
Riamet�/Coartem� - a highly effective combination
Riamet�/Coartem� is such a fixed combination antimalarial. The tablet contains artemether (20mg), a synthetic derivative of artemisinin, and lumefantrine (120mg), a highly lipophilic aryl amino alcohol. Lumefantrine has a much longer elimination half-life (several days) than artemether, and is associated with a low recruduscence rate, but has a slower onset of action. However, when used together, the complementary properties of artemether and lumefantrine result in a highly effective combination."
The form of malaria that Riamet combats, plasmodium falciparum, does not have the capacity to go into dormancy, so one course of Riamet is usually all you need to get better. There are two other forms of plasmodium, p. vivax and p. ovale, that are able to evade drug treatment by hiding in the liver. They can reactivate years after a malaria sufferer becomes symptom-free. The only drug regularly prescribed for the dormant form of malaria is primaquine.
If you check with the Bill and Melinda Gates Foundation, you will find that they are running African drug trials on primaquine. The World Health Organization is also considering wider distribution of this drug. The reason you don't hear more about it is that it can cause severe side effects in people with a genetic variation called G6PD deficiency, which is prevalent in Africa and the Middle East.
People with G6PD deficiency can still take primaquine, but in lower doses. The lowest dosage is frequently listed as 30mg "base" (that's two 15mg base tablets) per WEEK for 30 weeks.
I took it on a 15mg "base" per day, four-day-on, two-day-off pulse for three months, and probably could have stopped after two months. I took a G6PD deficiency test before starting this medication. The first two months, it caused intense side effects and a massive Lyme relapse. It should also be taken with lots of liver support, since dormant malaria hides in the liver and you are really going to stir things up.
It no longer has any effect, and I have not had babesia/malaria/whatever symptoms for three months. I also took three courses of chloroquine, spaced a MINIMUM of one week apart (it's very easy to overdose on chloroquine, since it stays in the body a long time and builds up). Children take a much lower dosage of chloroquine than adults.
Prior to taking this chloroquine/primaquine treatment, I had babesia/malaria/whatever for over five years. I took mepron and artemisinin for over a year. Artemisinin is a wonderful herb, but it really does not stay in your body long enough to cure you, no matter how high a dose you take.
And mepron was only a stopgap measure. It did suppress the babesia symptoms, but I relapsed every time I stopped taking it, despite taking two teaspoons twice a day and getting liver and kidney damage in the process. Each time I stopped mepron and then started again, it worked less well. liz28 Unregistered posted 08-19-2006 06:05 PM ________________________________________ Dave, thanks, it really is wonderful to read your increasingly enthusiastic and educated posts. Glad to see you are going to be getting out of here!
Just want to say, if you decided to explore either chloroquine or quinine, you shouldn't have to take as much primaquine. I took a lot more than was probably necessary because I heard about it first, then added in the chloroquine.
Also, chloroquine and plaquenil (i.e. hydroxychloroquine) are related, if you want to check it out in your research. Chloroquine is the much stronger version. That's probably one reason so many babesia sufferers feel better taking plaquenil, but rarely are cured by it. ________________________________________ IP: Logged |
liz28 Unregistered posted 09-04-2006 03:11 PM ________________________________________ For me, it was five months on rifampin/ketek for bartonella, and two and a half months on chloroquine/primaquine for babesia. Please note the chloroquine is taken three days on, one week off, and the primaquine is taken four days on, two days off, after having had a G6PD deficiency test at Quest Labs.
It's hard to tell yet whether the Lyme is gone, as I was disabled over five years and am going through a godawful cleanup phase. But after about five months on ketek/omnicef, I became symptom free and have remained so, despite being on maintenance abx. liz28 Unregistered posted 09-07-2006 10:48 PM ________________________________________ I took three courses of Nivaquine chloroquine spaced at least one week apart, three months of pulsed primaquine after taking a G6PD deficiency test, and artemisinin as temporary maintenance. So far, so good, although the primaquine did cause a temporary case of anemia. liz28 Unregistered posted 09-11-2006 10:49 AM ________________________________________ Try one course of Nivaquine chloroquine just to see if there is an effect. It only takes three days, and costs about $25.
Day 1 300mg twice a day Day 2 300mg once a day Day 3 300mg once a day
I ended up taking three courses, spaced a minimum of one week apart. Primaquine was part of the treatment, too, but for now it might be interesting to just see if this helps. liz28 Unregistered posted 09-28-2006 12:51 PM ________________________________________ Hey, just did a quick look through Lymenet after a nice, relaxing break (yay!) and saw this.
Yes, so far the chloroquine/primaquine treatment has been working. I did have a major Lyme relapse after stopping maintenance abx, which have been downgraded from omnicef/ketek to omnicef/doxycycline. And so I threw in an extra four-day course of chloroquine, and then two weeks of primaquine, just to be on the safe side.
It's true that if LLMDs start prescribing chloroquine en masse, they will bring the World Health Organization down on their heads. But you guys are smart--you'll find a way to do this.
Lots of Lymenetters have taken primaquine, though many have used it in mepron or Valtrex combinations. But you don't read much about them because they disappear from the board. One recently wrote to say she was going on her honeymoon, because her sight was coming back after ten years of vision problems.
It is a VERY heavy drug, though. If you check it out, be warned, the only reason to put up with primaquine is there are no other drugs like it.
Try asking your LLMD if you can take two 15mg base tablets a week for 30 weeks. Take one in the morning, and one at night, then wait a week. That will keep your side effects down, you will get the exact same effect as taking one tablet a day for 2 weeks, and it will not be waving a giant red flag under your pharmacist's nose. Your pharmacist has already sold you six months' worth of mepron already, so why not just tack this on for the next six months. And it should cost you about $2 a week. Who could argue with that?
Since primaquine is a travel drug, you may also be able to purchase it from a travel doctor. They are much cheaper than LLMDs, so feel free to shop around
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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