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marilynb

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 #1 
After getting hit with my 3rd autoimmune disease I've had it. Really people, what is your rheumotologist doing for you other than giving you nasty drugs to try and help your SYMPTOMS, and the drugs half the time make you sicker, THINK ABOUT IT! I went back on the LDN home page and finally succeeded in getting ldn. Actually I had to order 50mil pills from Canada(no prescription needed), You add 50mil water and dose yourself that way. LDN is the ONLY hope for us!!! I'm sick of being a lamb led to the slaughter house by my immune system and the medical profession. You guys owe it to your poor bodies and brains to at least go to the ldn home page and read patient results. One lady said lupus symptoms cleared up after a year or so(can't remember). This site studies ldn, they do not sell the drug, but they tell you how to get it, they are a non-profit organization!!! Please give me some feed back on this subject, I will let you all know WHEN I start seeing benefits from this medicine.  I am still weak after 2 wks. of trying to get over the flu. I have lost my sense of taste, that really pizzed me off. Take care everyone, HUGS to all. Lupus SUCKS!!!
taffylinden

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 #2 
Interesting information, marilynb!  I researched LDN, but not on its website, as I wanted to examine unbiased info and clinical studies instead of user testimony or anecdotal evidence. Any website with "ldn" in the URL is likely to be pretty biased/less reliable, whether it's non-profit or not. That's not to say they're bad, just not as reliable. 

I think LDN shows promise, and I'm very interested in learning how it affects you; however, I'm going to hold off on taking it myself until a lot more research is done, and even then, I'll make the decision with my docs. I hope you're still seeing a rheumatologist and that you've told her/him you're on LDN now, marilynb. Please, fellow lupies, don't take any meds, even OTC's, without talking to your doctor. Otherwise, you may not know, for instance, that you can't take opioid painkillers while on LDN. 

From the article, "The Use of Low-Dose Naltrexone (LDN) as a Novel Treatment for Chronic Pain," published  on the National Institutes of Health site: 

"Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed." In other words, there haven't been any studies involving enough people or that have been repeated. And some of the studies have only been done on animals. That's too bad.

The conditions that have been tested (again, in small studies) are fibromyalgia (where so far, it shows promise), Crohn's Disease (VERY promising), MS (not as promising), and Complex Regional Pain Syndrome (mixed). As far as I can tell, there have been no large-scale, double-blind clinical trials for LDN and its effects on lupus. I hope this changes soon.

"It is important to note that there are currently no guidelines for the clinical use of LDN. There is no FDA-approved use for naltrexone at any dosage for the treatment of chronic pain and inflammatory diseases. There is also no FDA-approved use of LDN for the treatment of any medical condition." Why is that significant? Let's use marijuana as an example. I live in WA, where weed is legal. It's still a federal crime, however, so there is no FDA approval or guidelines. THAT means nobody knows how much cannabis you have to take in order to relieve inflammation. Cannabis shows a lot of promise, but it's a "by guess and by golly" business.

I read it can take up to six months for LDN to fully kick in. How long have you been taking it, Marilynb? I sure hope it helps you.



marilynb

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 #3 
Hi Taffy, thanks for reply. The person who told me about ldn has MS and it is helping her. Remember my rheumatologist is the one that poo poos the symtoms I tell her about, she asked me if my butterfly rash was raised and rough and I know that isn't the case, LupieD even told me that if I remember correctly. I'm don't have ldn yet, it's on the way, also I'm not taking it for pain but to strengthen my immune system. I also know it takes time for it to help as most drugs do take time. I will certainly get back to guys when I see results. I have a feeling that won't matter though, you gals seem to dismiss what I bring up, just like ginger supplements, and they did help me, I have the proof, my rheumy also told me I shouldn't be taking ginger, I cut back and joints got much more painful so I went right back to the amount I was taking. Good luck to you and your belief that doctors are the best help in all matters, some doctors are open minded but a lot aren't like both of mine. Take care everyone.
taffylinden

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 #4 
marilyn, I'm for whatever helps you.  I said I hope to hear how it works for you. I meant it.  I also meant it when I said LDN looks promising. I understand that you're upset, but please slow down a little. I never said doctors are the best help in all matters. If you read my posts, you'll find that I quit going to doctors entirely after a bad experience with a rheumatologist last November. I now see that decision as a mistake, but I definitely don't think doctors are infallible. 

I'm sorry you interpreted urging caution as dismissing you.  Have you read the Moderator's post "Can I treat lupus with complementary or alternative medicines?" If not, I recommend it:

" Most alternative and complementary practices, however, have not been through the rigorous scientific testing and clinical research that all conventional medicines undergo, so it is difficult to know their effectiveness in treating lupus."

"In fact, some herbal supplements can make a person’s lupus symptoms worse, or interact in a harmful way with the medicines a doctor has prescribed. Therefore, before beginning any complementary or alternative therapy, it is very important for people with lupus to discuss these practices with their doctor (especially if planning to use herbs or supplements)."

If your docs have messed up, and you don't trust them, I hope you find new docs you like and trust soon. We all deserve docs whose opinions we trust. 

One more thing: lupus  is a disease with flares and calmer periods. Any med, RX, OTC, or herbal, that a lupus patient takes could be credited as easing a flare when really the flare was about to die down anyway. That's another reason anecdotal evidence alone is suspect.

I care about everyone on here. Nobody's out to get you. I just worry when I see anyone get so enthusiastic about a remedy that she recommends it to others based on anecdotes. I'm not putting you down for this; I'm just urging caution.

And I sincerely wish you the best.
marilynb

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 #5 
Hi Taffy, thank you for the reply. I will stay with my doctors, I am very happy with family practitioner, seeing her for 30 yrs now, dread the day she fully retires, we have a very good relationship and I can be very open with her. My rheumy is new and I trust her to do necessary tests and watch organs for trouble. Yes I read the complimentary article, ldn has no nasty side effects, except probable reaction if opiates were used within 48 hours. I am going to start with 1mil to be sure nothing bad happens. You only take 2 - 4 mils a day, extremely low dose. I'm not offended, and I appreciate your concern. HUGS to all, hope for a good lupus treatment someday. Take care Taffy, best wishes to us all. I'll keep in touch with updates.
marilynb

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 #6 
Oh, and Taffy? I NEVER TOLD anyone to take ldn, I told you all to RESEARCH it, to at least look into it. Was it you, or LupieD that was told they don't have lupus after they already had a positive diagnosis? I rest my case of being wary of rheumatologists , they can only follow medical profession guidelines that are in place. Boy, I have a lot of problems spelling these days. Just keep in mind they are limited to what they can do. Take care sweetie!
taffylinden

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 #7 
I stand corrected, mayilynb, and I apologize. 

I don't know about LupieD, but yes, I am the one who was told by a rheumatologist that I did not have lupus after having a solid diagnosis from another rheumatologist. But that doesn't mean I think all rheumatologists are inept. I had a bad experience with a husband once; that doesn't mean all husbands are abusive, and I certainly wouldn't tell my friends not to get married.  I should have done a more thorough job of vetting the rheumatologist who messed up; she had poor reviews from other patients. But I do understand that lupus is a highly complex disease that isn't well understood--not by doctors, not by patients, and certainly not by Big Pharma or Big Herba (who are often the same companies, BTW). 

I hope my experience can help others. I had bad experiences with Rx lupus meds. For that reason, I was interested in the LDN information. And also for that reason,  I won't allow my desperation to steer me toward something that hasn't been extensively tested for treating lupus. I know Naproxene has been extensively tested, but nobody's done studies on LDN's efficacy in relieving lupus symptoms.  

I'm not sure what you're referring to by "medical professional guidelines," but there's no guideline that says docs can't discuss or recommend supplements with patients. I know this to be true because my old rheumatologist and especially my old internist did this. The internist was especially interested in herbal supplements. Of course, he was concerned about lack of clinical trials, as he should have been. He was a great doc; I was sorry when he moved away. I hope all docs, including naturopaths, are limited in what they can do--limited by ethics, by solid evidence, by knowledge. 

I'm glad you have docs you trust, and I think you and I agree on some things. Patients should be valued members of their health care teams, not for medical knowledge but for knowledge of our bodies. It's foolish for patients not to tell their docs what supplements or other meds they're taking, yet more than half of all patients don't disclose this info.

Take care. I'll be looking forward to hearing how the LDN works for you. 
Robinj

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 #8 
Taffy? I wish you would stop apologizing for every opinion you post. Your experience is just as valuable as anyone else here. 
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
marilynb

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 #9 
Hi Taffy, no need to apologize, I appreciate your input. I'm sorry for your nasty doc and nasty husband. All I can say is I hope this stuff helps, don't like the sound of the other drugs used. I'm thankful for everyone's input in here, you all have taught me a lot, I'd be lost without you. Have a good day Taffy, HUGS to all. Marilyn
lrbell

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 #10 
Hi this is lrbell again;
I  at 3:00.had and am still taking a coctail of medicationspretty much everyday.  I have not been able to get my chmo done since January.  I was supposed to have an appointment on March 6th but was told by the social workerthat my insurancedoes not cover my treatments at a particular hospital.  So now I am working on trying to go through a doctor here in New Jersey to get my treatments done.  I have an appontment with that doctor on March 23rd at 3:00.  It is hard and people don't really understand the anxiety and stress that you have to go through not just the sickness itself but all of the other challnges with the disease.  You're not just fighting to get well but all other struggles of life.  I keep praying and asking God to keep me and my mind covered.

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marilynb

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 #11 
Hi everyone, I've been taking ldn for a month now. There are ABSOLOUTLY no side effects!!! Ten days or so after starting ldn, my dry mouth and dry throat were gone(I'd wake up 3 - 4 times a night, totally dry, no moisture anywhere in mouth and throat). I've had depression for 30 years and take 150 mgs of venlafaxine a day, still had blue mood most of the time, now I'm feeling the cloud lift, I feel happy, unbelievable!!! I also am walking better, feel up to getting things done instead of procrastinating everything. I still have muscle fatigue, but hope that will get better in time. I also started my 13 year old dog on ldn to try to pick her get up and go up. I will let you all know how I'm doing in another few weeks. Please try this prescription out, it doesn't hurt you like others, it can only help you!!! I can tell you how to get this at about $5.00 a month, what is there to lose???
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