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Thread: Some hope? An un-approved lupus medication

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    Default Some hope? An un-approved lupus medication

    [color=darkred][color=violet]I thought you would all be interested in hearing about this drug. It is called LDN low dose naltrexone. I heard about it from a friend. He knows someone with MS who was not doing very well at all. A doctor friend of hers told her how he studied this drug in school and that he thought she should try it. He gave her a prescription and after only being on it one month she is like a new person, feeling energetic and more like her old self. She is so thankful that she was told about this drug. It is an FDA approved drug but only in high doses to get heroin addicts off heroin. It is an inexpensive drug. It is known to help lupus patients, RA, chrones, ms, cancer patients and more. For some reason it is not used to treat lupus. It has hardly any side effects either. I am going to ask my Rheumy about it. I just thought you would all like to know about it. You can read all about it on
    http://www.lowdosenaltrexone.org/ If any of you have heard of this please respond. I am definitely going to look into it. Do a google on it and all sorts of stuff pops up. It is not a dangerous drug and you can take it along with your other meds as far as I can tell until you are able to wean off them. I think the reason we have not been told about it is because it actually works and drug companies would stand to lose a lot of money. The MS meds this woman was taking cost $2000. a mo. and this cost $41. mo. Honestly, I think a lot of us are stuck where we are at because we are at the mercy of the drug companies. Lu
    For I know the plans I have for you declares the Lord, plans for good and not evil to give you a future and a hope. Jeremiah 29:11

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    Hi. Lula - part of the problem is that many doctors are not even aware of LDN, because there have been no formal clinical trials that I am aware of. And the naltrexone pills or capsules don't come in any dose lower than 50 mg., so you have to go to a special compounding pharmacist to even get the very low-dose used in LDN therapy, or risk ordering from the internet - which can be a dangerous thing to do. Although it does look really promising for MS, rheumatologist worry about using LDN in lupus because it boosts immune function, and counteracts the effects of immune-suppressing medications like steroids. LDN can also cause liver problems in some people, and right now it hadn't been studied enough to predict which patients are at risk from developing liver toxicity. So people taking LDN need to get their liver enzymes checked. And many doctors are reluctant to prescribe it without some clinical trial evidence to back up anecdotal reports. Some clinical trials have been funded for LDN in MS, so hopefuly someone will fund a study for lupus too.

    At the 50 mg. dose used to treat narcotic addiction, naltrexone has significant side effects but these don't seem to be an issue in doses under 5 mg. But people who are taking any type of narcotic pain medication should not take naltrexone, even low dose, because it is an opiate agonist and will induce narcotic withdrawal. Women who have been treated for estrogen-sensitive cancers, or women at high risk for developing these types of cancers, probably shouldn't take LDN because it seems to affect estrogen metabolism. I think it will be interesting to hear your doctor's reaction - let us know how it goes.

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    My daughter has an appointment with him right after Christmas. I'll be seeing another doctor on the 19th. I'll let you know what they both say. Thanks for responding.
    For I know the plans I have for you declares the Lord, plans for good and not evil to give you a future and a hope. Jeremiah 29:11

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    Great - It would be really good to know there might be some alternative to prednisone, especially something that's affordable - I hope he's encouraging! I already have organ involvement but my niece was just diagnosed about a year ago and I'd love to think there might be something better in the works for her.

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    Do you know that the only drugs that are truly approved as lupus drugs are prednisone and asprin? I found that out a seminar the CLF put on not long ago! Crazy, isn't it?
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Wow, that is crazy. So it makes me wonder why this drug isn't being tried.
    For I know the plans I have for you declares the Lord, plans for good and not evil to give you a future and a hope. Jeremiah 29:11

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    Mostly because it costs millions of dollars to conduct clinical trials, and there's not much incentive to do that for older drugs whose patent has already expired. To get FDA approval for a "new indication" on an existing drug, the manufacturer has to submit a supplemental application for the new use. That means the drug maker has to do studies to show that the product is safe and effective for the proposed new use. Since doctors can legally prescribe an FDA approved drug "off label", there's not much reason for the drug companies to invest the time and money in a supplemental application. But a lot of doctors are reluctant to prescribe drugs that haven't been proven in a clinical trial, so the patients get caught in the middle. That's why a lot of the big foundations like the MS foundation sponser their own clinical studies and then give the information to doctors - maybe the Lupus Foundation will do something similar with the LDN. Because it seems like most of the new drugs they keep talking about for lupus don't ever make it to the drugstore shelves, and stem cell transplant turned out not to be a cure after all - so we sure need something else on the horizon.

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    I keep reading that there just aren't enough people diagnosed with Lupus to generate any interest in drug companies pursuing newer, more effective medications. They don't see the market for them, like they do drugs for common illnesses like high blood pressure, high cholesterol or diabetes. That seems pretty discouraging to me.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Well, the good news is that because lupus is not that common in the general population, new lupus drugs might qualify for the "orphan drug" program, which gives financial incentives like tax credits and extended patent protection to companies that develop drugs to treat rare diseases, where there isn't a big market for the drug. And because these drugs would fill an "unmet need", they would probably also qualify for "fast track status" that shortens the FDA approval process. But the statistics are pretty depressing - it takes 12 years on average for a drug to make it from a research lab to a pharmacy - about 1 in 5,000 compounds that start out in a lab will actually make it to human testing - of the ones that make it to human testing in clinical trials, about 1 in five will actually be approved by the FDA. Two or three of the drugs that have been investigated for lupus made it to the clinical trial stage and then got pulled because of side effects that showed up when more patients were involved in the study. Another problem is finding enough patients to actually do the clinical trials - when UCLA was getting ready to do a big clinical trial several years ago, they found out that fewer than 40% of the "lupus" patients referred by local rheumatologists actually met the ACR criteria for lupus. So those people who didn't fulfill the ACR criteria couldn't participate in the study - and the same thing happens in clinical trials all the time. So there are a lot of drugs in the pipeline, but getting through the clinical trial stage has been a big hurdle. I'm really hoping that with the Democrats in charge next year, there will be more funding for research and we might see some real progress. Lord knows we need it.

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