Finding a doc who uses LDN?
May 1, 2012 9:55 PM Subscribe
Do you take low dose naltrexone? How did you find a doctor willing to consider an off label use of a medication, even one as "safe" as this one?
Low dose naltrexone refers to using the drug naltrexone, which is approved for use in treatment of opiate addiction, in low doses, compared to its traditional use (approx. 1/10). It has been shown to be pretty useful for the treatment of some immune disorders and early studies in Crohn's Disease (which I have) have shown good support.
It also appears, since it is considered safe at 50 mg, 4.5 mg would be a no-brainer, at least to try. Unfortunately my current doc isn't very open to the idea and while he wasn't aware of the research, was unwilling to review the peer reviewed articles I had found to find out more. Disappointing.
I'm not digging for a doc who will prescribe me whatever I want, rather a doctor who might be more open to the idea, and perhaps has used it in the past. Early human trials and anecdotal "evidence" is encouraging, and frankly, I'm sick of struggling with the pain and would love to try something relatively low-impact (and affordable) before trying the drugs with some pretty serious side effects (and HUGE costs).
If you have somebody in particular you like, I live in Kansas City but would consider driving a fair distance to at least consult with a doctor and see what they think. So doctors in the surrounding region would be good too. Thanks!
Low dose naltrexone refers to using the drug naltrexone, which is approved for use in treatment of opiate addiction, in low doses, compared to its traditional use (approx. 1/10). It has been shown to be pretty useful for the treatment of some immune disorders and early studies in Crohn's Disease (which I have) have shown good support.
It also appears, since it is considered safe at 50 mg, 4.5 mg would be a no-brainer, at least to try. Unfortunately my current doc isn't very open to the idea and while he wasn't aware of the research, was unwilling to review the peer reviewed articles I had found to find out more. Disappointing.
I'm not digging for a doc who will prescribe me whatever I want, rather a doctor who might be more open to the idea, and perhaps has used it in the past. Early human trials and anecdotal "evidence" is encouraging, and frankly, I'm sick of struggling with the pain and would love to try something relatively low-impact (and affordable) before trying the drugs with some pretty serious side effects (and HUGE costs).
If you have somebody in particular you like, I live in Kansas City but would consider driving a fair distance to at least consult with a doctor and see what they think. So doctors in the surrounding region would be good too. Thanks!
Yes! I am taking that very medication at that very dose, for autoimmune joint pain and inflammation.
A doctor who does integrative medicine is likely to be more aware of this (admittedly still experimental) treatment.
You will have to have it compounded for you at a compounding pharmacy, just to add another level of difficulty. But if you find a doc with an integrative medicine focus, they'll probably have a pet pharmacy.
posted by Sidhedevil at 10:45 PM on May 1, 2012 [1 favorite]
A doctor who does integrative medicine is likely to be more aware of this (admittedly still experimental) treatment.
You will have to have it compounded for you at a compounding pharmacy, just to add another level of difficulty. But if you find a doc with an integrative medicine focus, they'll probably have a pet pharmacy.
posted by Sidhedevil at 10:45 PM on May 1, 2012 [1 favorite]
I Am Not Your Doctor but given the strength of claims (or lack thereof) and the nascent stage of clinical evidence it is unlikely you will be able to get a reputable doctor to prescribe it for you as suggested by someone else already. I am not sure what 'integrative' means in this context.
Good luck in your search
posted by london302 at 6:42 AM on May 2, 2012
Good luck in your search
posted by london302 at 6:42 AM on May 2, 2012
You might just have to do the legwork. My personal experience with getting things prescribed off label included finding someone who was not only a doctor but a DO, and talking to him. He listened to my request, performed a few blood tests to make sure it was okay for me to take the medication I requested for an on label and off label use. His tests found a different problem (less found, but more explained a long-term anomaly) that we corrected instead so I didn't need to take the medicine for its off label use after all.
Since that time, under his (sort of) guidance, I've taken a supplement (cinnamon) for blood sugar regulation, and went off of it when it actually made me ill. I'm currently taking two other medications under his guidance; both were prescribed for on label use but the first seems to have an off label use that we changed my dosage to accommodate, the second I don't need for the on label use but continue to take for the off-label use under his guidance.
I started out going to DOs rather than doctors at an early age. I've stuck with that, and will stay with my current situation for as long as we can all maintain a good relationship that everyone is comfortable with. Though my current main health care practitioner is not a DO, he works with me under the guidance of the DO (and I prefer the PCP to the DO now, as the PCP who is not a doctor or DO has worked with me for seven years now). This is the "sort of" situation I mention above - I like the DO but I like his non-doctor as my PCP. They also work closely with another specialist I have to deal with, makes continuity of care and cross-care information sharing much easier. I tell one group what I'm taking (and they see my bloodwork each other requested) and the other what I'm taking, and each know when I have appointments with the other and what we discussed/will discuss.
The specialist is interesting; I don't like him as much as my PCP, but I double check Specialists' reccs with PCP. I also make sure Specialist is clear what I'm being prescribed by the PCP and why; at least it's in my record even if he doesn't take as much time as i'd like to understand why I'm telling him this and how it's helping me in ways he isn't.
Luckily, I found a number of cites that indicate something my PCP is giving me is good for something the specialist sees a lot of. Maybe they'll start to "get it" if I keep giving them information.
Now that I think about it ... it was that first DO that set the pattern! I told him my problem, he listened to me and did the diagnostics, and basically said, "you can ask me to prescribe this to you for need B and it will also help with problem A. But if you ask me to prescribe it for you for Problem A [we will have to take these other steps that you may not want to take since you are a minor.]"
posted by tilde at 7:17 AM on May 2, 2012
Since that time, under his (sort of) guidance, I've taken a supplement (cinnamon) for blood sugar regulation, and went off of it when it actually made me ill. I'm currently taking two other medications under his guidance; both were prescribed for on label use but the first seems to have an off label use that we changed my dosage to accommodate, the second I don't need for the on label use but continue to take for the off-label use under his guidance.
I started out going to DOs rather than doctors at an early age. I've stuck with that, and will stay with my current situation for as long as we can all maintain a good relationship that everyone is comfortable with. Though my current main health care practitioner is not a DO, he works with me under the guidance of the DO (and I prefer the PCP to the DO now, as the PCP who is not a doctor or DO has worked with me for seven years now). This is the "sort of" situation I mention above - I like the DO but I like his non-doctor as my PCP. They also work closely with another specialist I have to deal with, makes continuity of care and cross-care information sharing much easier. I tell one group what I'm taking (and they see my bloodwork each other requested) and the other what I'm taking, and each know when I have appointments with the other and what we discussed/will discuss.
The specialist is interesting; I don't like him as much as my PCP, but I double check Specialists' reccs with PCP. I also make sure Specialist is clear what I'm being prescribed by the PCP and why; at least it's in my record even if he doesn't take as much time as i'd like to understand why I'm telling him this and how it's helping me in ways he isn't.
Luckily, I found a number of cites that indicate something my PCP is giving me is good for something the specialist sees a lot of. Maybe they'll start to "get it" if I keep giving them information.
Now that I think about it ... it was that first DO that set the pattern! I told him my problem, he listened to me and did the diagnostics, and basically said, "you can ask me to prescribe this to you for need B and it will also help with problem A. But if you ask me to prescribe it for you for Problem A [we will have to take these other steps that you may not want to take since you are a minor.]"
posted by tilde at 7:17 AM on May 2, 2012
it is unlikely you will be able to get a reputable doctor to prescribe it for you
The doctor who prescribed it for me is an instructor at Harvard Medical School. He is extremely reputable, to say the least.
In Kansas City, where the OP is located, there are several integrative medicine practices, including this one at the University of Kansas Medical Center. If you think that's not "reputable" I would suggest to you that your standards are misapplied.
as suggested by someone else already. I am not sure what 'integrative' means in this context.
This may be a US/UK terminology difference. In the US, "integrative medicine" refers to doctors who approach chronic illness from a variety of perspectives, including looking at lifestyle issues like diet and exercise, looking at sources of stress in patients' lives, and testing comprehensively for allergies.
posted by Sidhedevil at 10:36 AM on May 2, 2012
The doctor who prescribed it for me is an instructor at Harvard Medical School. He is extremely reputable, to say the least.
In Kansas City, where the OP is located, there are several integrative medicine practices, including this one at the University of Kansas Medical Center. If you think that's not "reputable" I would suggest to you that your standards are misapplied.
as suggested by someone else already. I am not sure what 'integrative' means in this context.
This may be a US/UK terminology difference. In the US, "integrative medicine" refers to doctors who approach chronic illness from a variety of perspectives, including looking at lifestyle issues like diet and exercise, looking at sources of stress in patients' lives, and testing comprehensively for allergies.
posted by Sidhedevil at 10:36 AM on May 2, 2012
I started out going to DOs rather than doctors at an early age
DOs are doctors, just as MDs are. DOs, in the US, are required to do all the MD training as well as the osteopathic curriculum in order to be eligible for licensure. DOs from other countries with different licensure requirements have to take US licensing exams to show that they are familiar with 100% of the MDs' knowledge base.
posted by Sidhedevil at 10:38 AM on May 2, 2012
DOs are doctors, just as MDs are. DOs, in the US, are required to do all the MD training as well as the osteopathic curriculum in order to be eligible for licensure. DOs from other countries with different licensure requirements have to take US licensing exams to show that they are familiar with 100% of the MDs' knowledge base.
posted by Sidhedevil at 10:38 AM on May 2, 2012
Is the research literature for low dose naltrexone more comprehensive for arthritis than Crohn's? If so, this might be the reason you're running into resistance.
It's a long shot, but you could try emailing the corresponding author of one of these studies for a reference. Because I was curious, I just took a quick look in pubmed. Other than the article that only states the author owns a patent on using naltrexone for IBD (?!) the others seem to be affiliated with a reputable university clinic or hospital. Could be worth a shot.
posted by NikitaNikita at 11:34 AM on May 2, 2012
It's a long shot, but you could try emailing the corresponding author of one of these studies for a reference. Because I was curious, I just took a quick look in pubmed. Other than the article that only states the author owns a patent on using naltrexone for IBD (?!) the others seem to be affiliated with a reputable university clinic or hospital. Could be worth a shot.
posted by NikitaNikita at 11:34 AM on May 2, 2012
Sorry Sidhedevil, I worded that badly. I appreciate the clarification for the crowd that DOs are doctors with extra training. D'oh!
And for completeness, when I received some woo woo suggestions on supplements for health from helpfulish family members, both the Specialist and PCP went over the list with me, we talked about the pros and cons of each supplement, and crossed a few off with prejudice. :)
posted by tilde at 12:47 PM on May 2, 2012 [1 favorite]
And for completeness, when I received some woo woo suggestions on supplements for health from helpfulish family members, both the Specialist and PCP went over the list with me, we talked about the pros and cons of each supplement, and crossed a few off with prejudice. :)
posted by tilde at 12:47 PM on May 2, 2012 [1 favorite]
MeMail me.
posted by S'Tella Fabula at 12:48 PM on May 2, 2012
posted by S'Tella Fabula at 12:48 PM on May 2, 2012
Another category of doctors that explore off label use of medications is "anti-aging." You could also go mailorder
posted by ohshenandoah at 3:38 PM on May 2, 2012
posted by ohshenandoah at 3:38 PM on May 2, 2012
Best answer: I sent the link to this thread to a friend who has been diagnosed w/ scleroderma. Diagnostic standards have been in flux; she has an auto-immune disorder with a long list of symptoms. She takes Low Dose Naltrexone (LDN), and sent this for me to post:
While I do seem to be getting better in general since I started taking LDN 6 months ago, I don't know know if it is the LDN that has made the difference. I came down with Dermatomyositis last fall on top of my previous autoimmune symptoms, and I realized that the new co-morbid disease explained my mysterious sudden weight loss and muscle weakness, and a host of other symptoms. Conventional treatment is to immediately start a regimen of immunosuppressants to prevent irreversible muscle loss and organ damage. I was so frightened that at the same time I started LDN I also increased one of my less-toxic conventional meds, Plaquinal, with a prescription from my Rheumatologist, of course. But now I have no way to separate the effects of the two drugs.
Here is how I got to use LDN: I studied the drug for months, reading everything I could find, collecting what research has been done, and statistics about what treatments have worked for conditions like mine from sites like Patients Like Me, and had phone interviews with a couple of pharmacists who have a lot of experience with LDN, I made an outline of my findings, followed by a longer paper with studies, citations and charts. I called my Rheumatologist to ask to meet with him about LDN. The meeting got off to a bad start, with him telling me he and his nurse had a good laugh after they googled "naltrexone" and learned that I was thinking of taking a drug designed to help with addiction. But after the initial rudeness, he did listen and I think I convinced him that while the probability of the drug helping seemed relatively low, it also seems to help a fair number of people, occasionally with serious remission of their symptoms. The risk of undesirable side effects looks to be extremely low and well tested over time, as the drug is FDA approved at much higher doses. (My side effect: I have extraordinarily entertaining dreams now.)
My biggest concern was possible interaction with the immunosuppressants that keep me functioning. There are contradictory opinions on the web, but the experienced pharmacists said they did not think it would effect the working of Methotrexate, but that the Methotrexate might hinder the effect of the LDN. I am looking forward to someday weaning myself off the drugs I currently take that are potent toxins (with worse patient ratings than LDN has). The most success with LDN seems to be for people who had not been helped by immunosuppressants and therefore had nothing to lose by trying LDN alone. I had too much to lose.
So my Rheumatologist agreed it was probably worth the experiment -- although he would not prescribe a drug with which he had no experience. I didn't expect him to prescribe it and I didn't need him for that. I was lucky that my DO, who was the one who suggested that I research LDN, was happy to prescribe it. The fillers used in the LDN capsules seem to have an effect on the outcome, so look for a reputable and LDN-experienced compounding pharmacy. I have a good pharmacy locally. Some pharmacies that offer LDN are rated at lowdosenaltrexone.org. Do not rely on that website for all your information -- it is an uncritical advocate for LDN.
For Crohns, have you tried eating raw cabbage?
I hope this helps. I wish you the best of luck.
posted by Mom at 5:53 PM on May 2, 2012 [1 favorite]
While I do seem to be getting better in general since I started taking LDN 6 months ago, I don't know know if it is the LDN that has made the difference. I came down with Dermatomyositis last fall on top of my previous autoimmune symptoms, and I realized that the new co-morbid disease explained my mysterious sudden weight loss and muscle weakness, and a host of other symptoms. Conventional treatment is to immediately start a regimen of immunosuppressants to prevent irreversible muscle loss and organ damage. I was so frightened that at the same time I started LDN I also increased one of my less-toxic conventional meds, Plaquinal, with a prescription from my Rheumatologist, of course. But now I have no way to separate the effects of the two drugs.
Here is how I got to use LDN: I studied the drug for months, reading everything I could find, collecting what research has been done, and statistics about what treatments have worked for conditions like mine from sites like Patients Like Me, and had phone interviews with a couple of pharmacists who have a lot of experience with LDN, I made an outline of my findings, followed by a longer paper with studies, citations and charts. I called my Rheumatologist to ask to meet with him about LDN. The meeting got off to a bad start, with him telling me he and his nurse had a good laugh after they googled "naltrexone" and learned that I was thinking of taking a drug designed to help with addiction. But after the initial rudeness, he did listen and I think I convinced him that while the probability of the drug helping seemed relatively low, it also seems to help a fair number of people, occasionally with serious remission of their symptoms. The risk of undesirable side effects looks to be extremely low and well tested over time, as the drug is FDA approved at much higher doses. (My side effect: I have extraordinarily entertaining dreams now.)
My biggest concern was possible interaction with the immunosuppressants that keep me functioning. There are contradictory opinions on the web, but the experienced pharmacists said they did not think it would effect the working of Methotrexate, but that the Methotrexate might hinder the effect of the LDN. I am looking forward to someday weaning myself off the drugs I currently take that are potent toxins (with worse patient ratings than LDN has). The most success with LDN seems to be for people who had not been helped by immunosuppressants and therefore had nothing to lose by trying LDN alone. I had too much to lose.
So my Rheumatologist agreed it was probably worth the experiment -- although he would not prescribe a drug with which he had no experience. I didn't expect him to prescribe it and I didn't need him for that. I was lucky that my DO, who was the one who suggested that I research LDN, was happy to prescribe it. The fillers used in the LDN capsules seem to have an effect on the outcome, so look for a reputable and LDN-experienced compounding pharmacy. I have a good pharmacy locally. Some pharmacies that offer LDN are rated at lowdosenaltrexone.org. Do not rely on that website for all your information -- it is an uncritical advocate for LDN.
For Crohns, have you tried eating raw cabbage?
I hope this helps. I wish you the best of luck.
posted by Mom at 5:53 PM on May 2, 2012 [1 favorite]
Response by poster: Thanks for the feedback, all! I hadn't thought about looking for researchers with medical practices, but it certainly makes a lot of sense. I will also check out patients like me. It is important to me to make sure I make an informed decision, in addition to having a doctor who is open to exploring the idea with me, even if we together decide it is a poor idea. Thank you all for your feedback. Any further info would be great too! PS, MOM: raw cabbage was hard for me but for whatever reason cooked broccoli does amazing things for keeping me regular when most fibrous foods just cause me pain. Isn't that odd how one food can be so different?
posted by gilsonal at 8:52 PM on May 2, 2012
posted by gilsonal at 8:52 PM on May 2, 2012
This thread is closed to new comments.
posted by Brent Parker at 10:19 PM on May 1, 2012