Was contacted by Linda Elsegoed on Facebook and invited to join the LDN group.
Had a look for information about LDN and discussed it with Richie after which I joined the LDN group and am keen to find out more.
This is the first drug that I have heard of for the treatment of PPMS, am amazed that I have never heard of it before now.
It seems to have been around for awhile now, it started off being used to neutralise drug overdoses.
Since then, it has been successfully used for other diseases MS being one of these.
I am very interested in LDN, understand it is administered orally in capsule or powder form.
Wonder what the side effects are?
This drug is very interesting but because there have been no drug trials/tests there seems to be only personal testaments not scientific facts.
Wonder why the neurologists I saw did not mention this course of treatment, they told me that there was not treatment possible for PPMS.
Is this is because it is not in patented at the moment, to any one drug company, so no one wants to spend money on doing tests/trials on a drug that they do not have the patent on.
From what Richie tells me he has not found anything that says LDN causes any harm, there does seem to be evidence that LDN will stop pain relief from opiates.
The way I feel right now about the quick progression of my MS, is that I do not have anything to lose by trying this drug, this is made more attractive by the fact that it is an oral drug.
Would very much appreciate other peoples input about LDN,
Have sent an e-mail to my general practitioner Dr. Wijngaarden for her feedback.
As well as to two neurologist Dr Professor Polman from the Vrije Universitieits Ziekenhuis Amsterdam and Dr. Kalkens from The Onze Lieve Vrouwen Gasthuis Ziekenhuis, Amsterdam.
I am interested in their views about LDN, but even more interested in the views of other people that I know with MS.
Have you tried it and what did it do for you, please let me know, your feedback is much appreciated.
Links to LDN:
http://www.ldnresearchtrust.org/
http://forum.ldnresearchtrust.org/index.php?/topic/982-2008-ldn-fact-sheet/
http://forum.ldnresearchtrust.org/index.php?/topic/1304-linda-elsegoods-story-2009/
http://www.ldnresearchtrustfiles.co.uk/docs/November_2009.pdf
http://www.lowdosenaltrexone.org/
http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
http://glasgowldn2009.com/category/conference-sessions/
13 comments:
Hi Herrad! I hope you find all the answers you're looking for! I think you're right, if you can have access to it and it seems to have low or no side effects, why not try it right?
I tried LDN for a while and it didn't help me, so I quit. I think if I was a doctor I would tell my patients that LDN is not proven to be a treatment for PPMS, but neither is it disproven. You are right though. The drug is inexpensive and has a mild side effect profile. So the risk of trying it is very low.
The proponents of LDN are very loyal to this treatment, and often mention the conspiracy theory that doctors won't prescribe it because nobody can get rich off it. I'm not a big proponent of conspiracy theories. In my opinion, and remember I'm PPMS and I've tried the drug, there is just not enough evidence out there that this works. That's why most doctors don't suggest it.
I think it may help some folks but not others. I'd give it a try if I were you. It can't hurt.
I hope I don't offend you or any of your readers with my blunt opinion of LDN.
Good luck.
Mitch
Hi Rain,
Thanks for your visit and comment.
Will find out all I can first and then make up my mind.
Hi Mitch,
Thanks for your visit and comment too.
Shame it had no effect on you, thanks for sharing your information.
It is good to be informed.
I was not at all offended, I wanted information and not flannel.
Curious what the side effects were that you experienced.
Thanks for coming by both of you and leaving comments.
Have a pleasant afternoon.
Love,
Herrad
http://www.rxlist.com/revia-drug.htm
Naltrexone: A derivative of naloxone used as an orally active and long-acting potent pure narcotic antagonist. Naltrexone is an alternative to methadone in the treatment of addiction to heroin and other opiates.
This medication should not be used if you have certain medical conditions. Before using this medicine, consult your doctor or pharmacist if you have: taken any type of opioid drugs in the last 7 to 10 days, current opioid dependence (including methadone maintenance), active liver disease/liver failure.
Pharmacodynamic Actions: REVIA is a pure opioid antagonist. It markedly attenuates or completely blocks, reversibly, the subjective effects of intravenously administered opioids.
When co-administered with morphine, on a chronic basis, REVIA blocks the physical dependence to morphine, heroin and other opioids.
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Herrad, it appears this is an addiction treatment drug for opiates and alcoholism, and is used for MS "off-label" use.
If you try it, I would adhere the warnings of not using opiates within the time bracket listed, and I am not sure how marijuana fits into this picture for side effects via drug interaction.
---
http://en.wikipedia.org/wiki/Low_dose_naltrexone
Low dose naltrexone (LDN), where naltrexone is used in doses approximately one-tenth those used for drug/alcohol rehabilitation purposes, is being used as an "off-label" treatment for certain immunologically-related disorders. The use of LDN for such diseases as cancer was first proposed by Ian Zagon, PhD, and LDN's broader clinical effects in humans were proposed by Bernard Bihari, MD[citation needed].
In Milan, Italy, a sixth month trial with a low dose of the opiate antagonist Naltrexone (LDN) was carried out in 40 patients with primary progressive multiple sclerosis (PPMS).
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis,-- science abstract
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Sending a BIG hug!! Hope the evening is a pleasant one.
I´ve used it for two years... and it WORKS! Haven´t had any relapses since I started LDN treatment, and I feel better than I´ve done in many years. Good luck to you!
Hi Stephany,
Thanks for coming by and for all the information about LDN, brilliant, I shall have a look at the links and research this further.
Also need to hear from my doctor and the neuros, I may try it but only if I am well supported and the dose is correct and there is no conflict with the weed.
Hi Anonymous,
Thanks for your visit and comment, how interesting that LDN worked for you.
Can you tell me more about how you took LDN, was it a high dose and did you have any side effects?
Lots of questions hope you don't mind.
Thanks both of you for coming by and leaving comments.
Good to get more information about LDN.
Have not mad up my mind yet whether I will try it.
Going to wait to hear what the doctors think about it.
Richie is going to research whether it will cause a conflict with weed.
Have a good day tomorrow.
Love,
Herrad
Herrad, I tried LDN years ago. I had RR form of MS then. I was one of the very few who had an adverse reaction. The pharmacist said it was the first time he had seen someone's walking get worse. None of the many MS patients whose pescriptions he serviced ever had that reaction.
I agree with Mitch at Enjoying the Ride that LDN helps some and not others. This may be because MS may actually be several illnesses masquerading as one. When the day of individually customized medicine finally arrives, we may know why some drugs work for some and not others.
Good luck with LDN. I hope it works for you.
Judy
Good morning, afternoon or evening! =)
With MS I think there is no "one drug fits all" approach as no one has the same symptoms it seems. Perhaps the same could be said for medications. I know...plagues make different symptoms but you know what I mean!
I know some people swear by it and others do not. The same can be said for THC. So.... it is one of those individual decisions. To try or not to try?
I am sure you will make the right decision for yourself.
Herrad,
I had no side effects...just no benefits.
Mitch
Hi Judy,
Thanks for coming by and sharing your LDN experience.
I have been hearing about a variety of experiences, no one persons experience seems to be the same as another.
Yours seems the most extreme that I have seen so far.
Hi Sherry,
Thanks for coming by and leaving a comment about LDN.
I am interested in what the effects are of using thc (weed) and LDN.
Hi Mitch,
Thanks for coming by again and letting me know that you had no side effects.
Thanks for coming by dear friends and sharing your information about LDN, its quite amazing for me to consider that there maybe something that could maybe help my MS.
That is an incredible thought/
Have some reading to do and some talking with doctors and Richie before I make a decision.
Love,
Herrad
Hi, Herrad! I use LDN for my RRMS (although I suspect I'm more SPMS). I've been on it for six months now after trying several of the mainstream medications. Two months after starting it, I regained feeling throughout my entire body! I had lost feeling in 2007 when I was having horrific exacerbations. LDN has also given me more energy and I walk better. Prior to starting it, I was really wondering if I needed a wheelchair. I don't need one now, but I do use a cane.
University of California – San Francisco (UCSF) did a small study in 2007 that was funded by patients. It was conducted by Dr. Cree, who is a neurologist in their multiple sclerosis center. Here's a link to his study: http://painsandiego.files.wordpress.com/2009/05/ldn-in-ms-bruce-cree-md_-2008-ucsf-poster.pdf and here's information from the National Multiple Sclerosis Society on the same study: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=148. Here's a site that discusses clinical trials past, present and in the future: http://lowdosenaltrexone.org/ldn_trials.htm.
UCSF is in the process of applying for a grant through the National Multiple Sclerosis Society to conduct a larger study on LDN. This is according to the director of the UCSF MS Center, Dr. Doug Goodin, who I see. He is also the one who believes I should stay on LDN and not go back on any of the other disease-modifying drugs.
Because pharmaceutical companies have lost the patent to the drug, there’s really no incentive for drug companies to conduct clinical trials. They would certainly lose money because naltrexone is a cheaper drug than say, Copaxone. Another reason only smaller trials have been conducted is because it costs a lot of money to put a trial together (upwards of a million dollars, I’ve heard). This is why UCSF is asking for grant money to conduct a larger trial.
I could go on and on about this medication because I’m so passionate about it. Lol Please feel free to contact me or anyone else in the LDN community if you have additional questions. We’re hear to listen and help!
Hi Herrad
I tried LDN for a couple of years (some of it in tandem with taking copaxone as well). Like most of the others that have commented here - it was hard to tell if it was benefiting me or not, although it did seem to help with easing my fatigue.
Like most stuff with ms because there are so many potential factors or cause and effect it is hard to know what is or isn't definitively helping, especially if it is slowing things (how fast would things be going otherwise?) rather than stopping things.
Howeve, I did not have any side effects from it (apart from some trippy dreams the first night).
The dose is only one tenth (or less) of that of its original prescribed use for addictions.
Also - it is extremely difficult to find any neuro who will prescribe it because of the 'unproven' factors. I always got it prescribed by a gp but explaining that it helped ease the fatigue rather than a more overarching statement that it was to slow or stop my ms progression.
(THe LDN yahoo group also has a list of drs known to prescribe it - although not sure if they have one for Holland or not.)
Hope that helps some.
cheers
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