This drug, in higher dosage, is often used to perfect withdrawal from physical addition involving opiates, but in 1/10 normal dosage long-term therapy, has been known to be effective against a variety of auto-immune diseases such as MS, Lupus, and Chrone's disease among others. It is currently involved in a Cal, USA clinical study of fibromyalgia; no results published yet, since the study ends in June, 2010.

In the USA, any licensed physician can prescribe the medication, and several compounding specialist pharmacies located in the New York, New York, USA area specialize in producing the smaller doseage packages at reasonable prices, since the drug is already approved.

I can direct anyone to an appropriate website for purchase; I have no connection whatsoever to these individuals or companies, etc.

cjl

My personal opinion, but I think it is wrong for you to promote an opioid drug used in withdrawal from hard drugs & alcohol as a possible drug to be used in MG.

What evidence do you have about its use in MG? In addition & my opinion it should be left in trial until it has been rendered safe to use in aid of any disease!! Sorry if I've misunderstood your post but you appear to be offering a website for people to purchase this.

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Tina
Gloucestershire UK

Last Edited on 13-Jun-2009 11:58 AM

I have no opinion either way. The trial and usage I have read about are for other auto-immune diseases; I am just asking if any scientic activity exists with regards to this drug.

As to any "stigma" because of alternate usages: I am also on Coumadin [warfarin] as a blood-thinner. Warfarin was originally used as rat poison. Would you also want no one to "promote" it when some were using it for what eventually became a quite standard usage.

My only point is to foster information exchange. If someone is already theorising about MG-related usage of this drug, I'd like to know about it. If someone who might be in a position to ponder it reads this, then all the better for having posted this, etc.

Apparently, it is already considered safe enough in larger dosage for the purposes you state; the general theory is long-term usage at lower dosage; in a sense analogous to the common use of 81 mg enteric-coated aspirin taken daily. It is so safe that licenses physicians in the USA are already allowed to prescribe it, just that only a relatively small number of pharmacies are available to "compound" it as in USA, most pharmacies are merely "pill stores" and lack the personnel and/or facilities to actually produce a freshly made "potion". In essence all most of them do is move pills from one bottle to another smaller one they sell to you, etc.

cjl

Last Edited on 13-Jun-2009 12:08 PM

Yes, the logic behind my posting is that this isn't available on prescription yet in the UK. I too know very little about it but have read about people with MS (and in the UK) are already taking it, but also read that the dose has to be very precise/on time to avoid problems etc.. I may be talking rubbish about the dose, but that is the problem with taking something that isn't yet available here on prescription, you only have the words of others rather than assurance of its abilities, side effects etc., by a reputable source (in the UK NICE). I certainly don't disagree with trials, research or promotion of any drug. I am aware of the roots of many drugs in use today, including warfarin. The point being that warfarin has been rendered safe to use (at least in the UK) for the thinning of blood, while Naltrexone hasn't.

Levitas is correct in saying that buying drugs from the internet in the UK is frowned upon, and quite rightly. There are many internet sites selling drugs rendered to be dangerous in the UK, also not being too fussy about who they are prescribed to and without a full medical case history to go off.

I am not against any medicine that works, but think all medicines should only be prescribed in a controlled manner(sorry but that's the auditor in me).

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Tina
Gloucestershire UK

Thanks for both of your inputs. I have no intention of "pioneering" such efforts myself either. However, I would be interested in the experience of others should any surface.

In the USA we have had our share of bureaucratical consequences with "interesting" adjustment of drug testing varying from certain drugs taking many years to be allowed to be marketed, to drugs with after-sale additional trials revealing actual dangers in the drug leading to the voluntary removal from the market by the maker. One could surmise this has to do with various "grease the wheel" activities of varying sizes considering all of the large variations.

Thus, I, as well as I suspect others, would be interested in whatever is happening, clinically speaking, with regard to any drug, whether by official studies or not.

cjl

Last Edited on 13-Jun-2009 2:25 PM

There is plenty of evidence that many of the drugs sold on the internet are either FAKE, or in the worst cases, are actually dangerous because they contain unknown active ingredients.

(Of course this does not apply where you are using an internet connection to fill a repeat prescription from your regular doctor and pharmacy - my own GP now provides such a a service, but I have not tried it yet).

On the original subject - I know of No clinical trials into the use of this drug to treat MG (but that does not prove there are no such trials in progress or planned).
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Peter Finney

MGA Chairman

Last Edited on 14-Jun-2009 2:59 AM

I found out about this topic on the Internet. However, the compounding pharmacies that will fill the prescription from a licensed USA pharmacist will NOT perform Internet transactions, although they will ship the order for a standard charge. You must either have your doctor FAX the prescription, or he must personally telephone his order directly to the pharmacist after establishing his identity in the usual manner, including his NY medical license number. [Note: New York State regulations demand all doctors to provide their official license numbers on all prescriptions.] This is standard operating procedure on just about any medication. A third-party posted on the Internet the telephone and FAX numbers of a number of these pharmacies, and it was not meant to be exhaustive, although all of them happen to be within around 200 miles [322 Km] of my location [which thus means much further away than was is usually accepted as the "New York City Metropolitan Area"]. Although I have no specific information, it is true that all of them are subject to the laws of New York State as well as all federal US regulations. New York State is not known for any form of additional "flexibility" over the other US states, but I admit this could be a specific New York state quirk, as opposed to the personal preference and limitations of the Internet-posting author of the original article.

Additionally, all payments to these pharmacies have no Internet component whatsoever, other than perhaps some might actually accept PayPal. [I have noticed a tendancy for retail merchants to accept PayPal for goods far afield from medical supplies, even companies not known for any form of Internet presence other than perhaps some master listing by category associated with marketing arms of the local telephone conpanies.]

Thus, there need not be any alarm with regard to any form of Internet drug sales in this instance; it simply does not apply. The only reason these pharmacies are listed has to do with their willingness to compound a doctor-orderd formulation, and specifically in the case of this specific formulation.

I myself actually use an online form of prescription refill service; only my doctor can enter the initial prescription into the system of the drug company [which is a company recommended by my insurance carrier; this has to do with discounting prices more than anything else; they cannot force me to choose any particular pharmacy company, but it is markedly easier to deal with this one because of the various co-payment arrangements that would keep me out of that loop, etc.]

cjl

Last Edited on 14-Jun-2009 1:53 AM

Tina referred to NICE. The National Institute for Health and Clinical Excellence (NICE) is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.
Although it is stated to be independent it has become intricately bound up with our Nation Health Service and the government. Its critics accuse it of delaying the approval of expensive drugs in order to keep a lid on health care costs (as these are “free at the point of use” to all).
But who would want another Thalidomide accident?
Certainly they err on the side of caution but perhaps this is no bad thing.

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Levitas

Thank you for your welcome.

It is well known on both sides if "the pond" about language difference nuanced meaning, and I am attempting to use language that I hope makes it clear what I am attempting to get across; in the process, other americans will accuse me of sounding "stilted" or worse. [Not that I care!]

However, I always attempt to not succumb to the culture, especially since I have seen so many decades of it come and go at my age [62].

Additionally, and this is somewhat ironic, I have some medical training specifically in neurophysiology. My present doctor is the director of a large local area university hospital neurophysiology clinical lab in the New York City suburbs where I [and he] live.

My profession consists of expertise in many areas of computers, both large-system and personal, stretching over the course of decades from the mid-1960's to the present. [If anyone is interested, I can usually be found posting in various alt.sys usenet forums about old computers, especially alt.sys.pdp8 which, [ahem!] I personally created!] [Also accessible from Google Groups.]

Along the way, I spent 20 years working in a *research* [not clinical] neurophysiology lab, designing, implementing, and performing real-time data acquisition and analysis programs studying opto-kinetic nystagmus [eye movements associated with following moving objects; it would be really interesting to see how my personal situation is now so variant from the average individual!]. In fact, my present doctor knew personally my late ex-boss who was known as a "grand old man" in the field they share. [When I first met my doctor, he indicated "it's a small world" in that regard; my ex-boss also worked heavily with many European doctors, primarily in Switzerland, and also Asia; the world of neurologists is pretty well "linked" in the world of research into neurological issues.]

So, essentially, I'm just one of those "computer nerds" who grew up, got married, and then got MG.

In any case, my background often comes in handy when speaking to various physicians, as I can use the mindset of essentially doctor-to-doctor discussing the patient, who incidentally is myself! [Many of them have to stop and think about exactly who they are addressing, as these conversations are devoid of any "bedside manner" or somesuch.]

Thus, I can usually speak in a sufficiently scientific manner to get across the main points of a subject;perhaps this will help all to understand and not get bogged down in unintended side-issues, etc.

So, in those immortal words sung by Eric Burdon, lead singer of the Animals in the '60s:

But I'm just a soul whose intentions are good:
Oh Lord! Please don't let me be misunderstood.

cjl

Last Edited on 14-Jun-2009 3:06 AM

No hard feelings here, my intentions were good too. I think everything that concerned me has been said.

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Tina
Gloucestershire UK

No problem at all. Better to have concerns than all to be too lax. Often I find on certain forums you can say nearly anything and it often just gets ignored. This forum was recommended to me for a reputation of quite the opposite!

Despite the fact there are some say 60,000 MG patients in the USA, with over 300,000,000 people, there really doesn't seem to be enough interest in discussing much about MG "over here".

Thus, I am seeking information "over there" as it were.

cjl [with apologies to George M. Cohan]

Last Edited on 14-Jun-2009 3:16 AM

I have somehow missed your posts until now,

and I have to say that I am very impressed both by you and by the medical care that you have recieved.

it seems like you have managed to find a group of physicicans that all sound very competent and truly assess risk/benefit ratio, which is essential in someone with a combination of medical problems like yours, and not less important are ready to discuss your management with each other, not expecting you (despite your medical knowledge) to be the mere coordinator.

and I do hope that you will eventually find the optimal treatment regime that will enable you to continue with your work, and not risk yourself needlesly.

at least it seems like you have very good partners in doing so.

and last but not least, I fully agree with you that
it is better to have concerns then to be lax. and I think that every attempt should be made that a reputable internet forum will have as much information and as little dissinformation as possible.

we are sorounded by advertisments, superficial media scoops and what not, that can easily be missleading and potentially dangerous for those that do not have a professional understanding of the matter at hand.

many times eager reporters will use certain data in a way that suits them and not always in the best interest of the public, and when such information is disseminated it can lead to serious harm, even if only by causing needless panic, in vulnerable groups of people.

so I hope we will see you around.

alice.

Thanks for that remark about "see you" as I am always hoping that can be perfected [as should be the sentiment for all of us here!].

You do have to be the "manager" or central steward of your own medical care; MG has enough "moving parts" and you need to keep your own diary or better still computer records to support your own case. However, in my case, MG is only a "section" within a larger system of other drugs I need to take, and the potential interactions that become dependent on what is taken when and with what, including the presence or absence of food, etc.

Also, anyone can be overloaded and forget something. I always ask the doctor if we covered all of the bases; in a few cases, one doctor uncovered a problem with the procedures ordered by the other doctor. For example, I require a D-DIMER test to determine if I can discontinue Coumadin [Warfarin]. However, unless you temporarily discontinue the Coumadin, you will always get a false negative! Good thing I discuss all with all practicioners.

My IVIG RN is really good, and always asks about medication changes. Always on the lookout for interaction problems with IVIG before infusion.

When I was admitted to hospital for the initial 4-5 day IVIG treatment, I had to create a credible "medical" looking doseage chart to explain my medication, including complications such as titration of Coumadin [Warfarin] with day-specific doseage, etc. Since I created this document to have a professional look, it was accepted as if some document from some medical agency, but actually it was a thorough detailed explanation of all medications including all of the appropriately arcane measurement systems [such as measuring Potassium Chloride [KCl] in terms if mEq [milli-Equivalent units] instead of gms. It's a doctor-speak mechanism to lock out the patient in some cases! Thus, how could I, a mere patient possibly know what was on the list, thus if had to be "authorized" and was accepted as such. Far better than to have to be interrogated by the charge nurse!

In any case, it is clear that no one knows "everything" you need to know, thus it's great to have a specialized and properly responsive forum as I'm sure you already know.

cjl