LDN Help
 

I want to start taking low dose naltrexone for my crps. I am pretty nervous and have a few questions before I start it. My first question is did it make anyone worse? I am trying to take back my life and am very nervous about anything getting worse then it already is. My second question is how did you guys get it? Did you get through your doctor or online? Prescription or no prescription? I believe i have read you have to get it compounded and I know some labs are better than others. So if anyone just has any recommendations on how to acquire this and if I should even bother then I'd be very thankful.

Hi Tata,

Biobased is our resident LDN taker and has done well on it. I was interested but my doctor is not on board with LDN yet so I don't have personal experience. Stanford University is currently studying it which gives the impression that it is worth pursuing. Side effects are possible with anything but there are recommendations on titrating LDN up to the common dose of 4.5 mg to avoid them.

While it is possible to get LDN without a prescription from online pharmacies my personal slant is towards medical oversight and known suppliers. When I was looking into it I found the easiest way to find out what doctors in my city prescribed it was to call the compounding pharmacies. They can tell you who is writing prescriptions for it.

BTW, I hope you didn't take any offense the other day when I mentioned your youth possibly affecting your interactions with doctors. That was not meant as a slight against you. I was thinking more about how your doctors might have a bias.

It all depends on your doctor. If the doctor isn't willing to prescribe it for you, in *your* case, then it won't happen. Who knows it might not even be good for you in your case. Every case is different, and every individual as well. Listen to your doctor. I believe you were prescribed gabapentin? Give that a solid go.

I know it significantly lessened my pain.

You really can't go around saying "I want this, and I want that". It's not up to you. You are not a doctor and can't judge what is best in your case.

Everyone's different.

Oh nevermind about the gabapentin.
I'm confusing you with someone else on here.
What does your doctor want to do for you?

on telling doctors what you want....

I feel this is okay to do. I hope that doctors treat us as a vital part of the care team and want our input. After all, we're the ones living in the body and need to have our ideas and experience respected. Patients often have firm desires/concerns about what they are and are not comfortable with. Feeling comfortable with your treatments is important.

If doctors disagree with ideas it could be from their clinical experience with a treatment but it could also be because it just isn't something they have tried with their patients. Not all doctors are current on the latest research and treatments or even things to avoid for CRPS. I respect my doctor's help and knowledge but I also like doing my own homework on what's out there.

Most doctors don't know about LDN. If you look up Dudley Delaney and LDN you will find information that you can bring to your doctors. But be prepared for rejection. Also, on his site he gives Crystal Nason's email. She supposedly will give you the names of prescribers in your area, I wrote to her twice, but never got the names, but just for full disclosure, I did get emails asking for donations.

Try calling compounders in your area for LDN prescribing doctors' names as Littlepaw suggests. I had zero luck with this tactic, but I hope you are more successful.

LDN is a miracle IMO. There are tens of thousands of people successfully taking it for many auto-immune diseases. It has few side effects, is affordable and is easy to mix yourself so you can control the dose you take, which is the way Dr. Bihari recommends.

Do not give up. This is your life. I sent you a PM, please check your in box.

I feel that you have to advocate for yourself when it comes to LDN and CRPS. Most doctors know so little as it is when it comes to CRPS that if it were not for us, the patients doing the countless research that we do to understand all that we are going through, they might not ever even look into medications such as LDN.

I was not able to find a doctor that was willing to work with LDN for me, but that is partly because my doctors had me on high levels of opiates since well before I ever heard of LDN. If you are able to find a doctor that is willing to work with you and your research and suggestions, then hold on to them and see if it helps. I like Littlepaw's and Bio's suggestion about calling around to compounding pharmacies. They may only be able to offer a few suggestions of doctors that might prescribe LDN, but it is someplace to start.

Any reason why LDN is so "popular" here all of a sudden? I feel like it's almost being pushed.

I mean, I know it's "new" and all, but... really? It's a pain medicine, right, not something that improves the CRPS. And there are plenty of other options in that regard. And everyone is different!

I've been on Neurontin and buprenorphine patches + sublingual buprenorpine since 2004. These things have tackled my pain tremendously well. I do have my moments where the pain breaks through, but the sublingual pills take care of that pretty darn well. I do have a remnant of pain, but nerve pain is difficult to truly get rid of.

Nothing can be done for my legs anymore, but I knew that. It was far too late for any kind of treatment (not that doctors didn't try and give it their all, because they *did*, you betcha).

My arms, different story. That was early stage and was tackled with calcitonin pretty well (I react favorably to that medication).

Anyway, what I want to come across is that it is DIFFERENT for everyone, and it's like LDN is just being pushed forward as "the answer", and I don't like that - at all.

Just wanted to get that off my chest.

CRSPbe,
I am not sure why you are concerned about LDN or do not like it. I will continually advocate for it, because I have been able to avoid a host of drugs, interventions. I know that the combination of LDN and Aqua PT saved me from life in a wheelchair, permanent allodynia, drop foot, dystonia, floppy ligaments, tendinitis, hammer toes, mind numbing pain, inflammation, being ice cold 24/7, etc.

FYI LDN is not a pain med by any stretch of the imagination. LDN is not symptom control either. It works by getting the body to heal itself, a novel modality. Watch the Joseph Wouk videos on You Tube. Or read what Bihari and Chopra have to say about it. Joseph Wouk
- YouTube
Treatment of Complex Regional Pain Syndrome (CRPS) Using Low Dose Naltrexone (LDN)

It was stories like yours that literally scared me into searching for alternatives, because I could see where CRPS was taking me, so I am eternally grateful that people generously shared their time, pictures and stories.

Yes, I still have pain, which is probably from the CRPS osteoporosis I have, but unlike the pain I had before I was diagnosed it is bearable. I am for the most part medication free and reclaiming my life inch by inch. Should I stay silent, when I know what worked for me, lest it upset someone? Should I have opted for a lifetime of pain management medications, instead of seeking a way to heal myself?

What I am getting at is many doctors know so little about CRPS and the many treatments that are more recently being used and researched. We, as the patient need to bring new ideas to their attention sometimes or some opportunities that may, or may not help, could be passed up, whether it is LDN, IVIG, Alendronate and other bisphosphonates, Ketamine, or anything else. Doctors, just like most people, have a tendency to get stuck on doing things a certain way. They should be open to new treatment ideas, should be willing to listen to their patients and work with them instead of just sticking with something that worked for one patient at some point in time.

That's not what I mean. There is such a thing as talking of your own experiences. That's absolutely fine, but just trying to get everyone on board with the LDN, to me, is being a bit pushy. Like I said, not everyone's the same. And LDN might not work for us all.

Didn't they do all they could do for me? Yes. They did. And I am left with a disability, have been for 21 years now. Nothing more can be done, and it is not reversible. This is my doctors talking. Not me.

You don't know me personally, so that's one thing. You can't possibly come out and say, well if you just take LDN you'll be fine. Or took LDN you'd be better off. See. That's not up to you. And that's what I'm getting at.

Because it works for you, might not mean it will for someone else. I'm just trying to be a little conservative on that part. That's all.

And there is nothing wrong with how CRPS is being handled still for the most part. It is just a *very* disabling, and difficult disease.

Yes, we are all trying to find what works for us, but that doesn't mean LDN is the "hallelujah" for us all.

CRSPbe,

It may be too late for you, but I have no way of knowing this, but I do know it is not too late for others. LDN may or may not work, but it is worth a shot. It helps more than 80% of those who use it.
What Others Are Saying About LDN
I think these odds are pretty good, but I have never once said that it will help everyone.

Feeling as you do, may I ask why you bothered to post on an "LDN help" thread posted by a new member who asked for advice about it?

In retrospect I think I am lucky that doctors did very little for me, because I had to help myself. I was also lucky to have a supportive husband and encouragement here. My view is I will preach to whoever will listen, because if I help just one person my pain journey will have meaning.

True.

I don't know. I felt like every answer to every question for help here lately was "LDN" this and "LDN" that. It just bothered me a bit. As there are plenty of treatments for RSD/CRPS out there, all equally valid. Why aren't *they* discussed as well?

Oh dear, perhaps you missed that this is an LDN specific thread. Tata asked about LDN.

I am aware of that. But it's always good to note that there are alternatives. And my point is, it is up to doctors to decide, not for patients to demand. ;) Besides the fact that we need to be advocates for our own health... it still is up to your doctor.

We have to agree to disagree. My PM doctor praised me for "owning my disease." He said that the people who take charge of their disease are the ones who improve. Frankly if I had left it up to the doctors I saw I would be in pain trapped on aero bed in my den.

Btw, Aqua Therapy is one of my favs.

Hi Tata, I hope what you need isn't getting buried in here too badly. We seem to be getting a little off-topic.


CRPSbe,

Tata specifically asked about LDN as a possible treatment. We are supporting her by sharing what we know. I don't know why this offends :confused: If posts on this topic really bother you maybe it would be better to ignore them.

Yes, Bio raves about LDN. And why not? It has helped her tremendously and is a non-invasive, inexpensive, non-addicting, low side effect profile treatment with research behind its efficacy. I'm glad there is something positive for Tata to hear about it. I wish we had more treatments like this to hooray about.

We do talk a lot about different options. However, we have our own bias because if something is working for us it is often the result of a lot of trial and error. We are limited by being able to share what we know personally and what research we've encountered. Naturally the same things are going to come up again and again.

As for CRPS being "very" disabling. There is that possibility for sure, but the statistics support improvement in the majority of cases. I fully agree it is a difficult disease but I hope sharing our knowledge with each other helps us all achieve the best possible outcome.

Hugs to Tata :hug: and thanks (we get a little carried away sometimes)

That's why I think it's important to talk about all of it, to give someone options and *perspective*, even if they're "focused" on one thing. Which is not what was happening in this thread, so far.

I know a few people for who the disease was with them for the rest of their lives, and that is a handicap in and of itself.

For me it is very disabling, yes. I have it in 4 limbs. I mean... 2 are totaled and beyond repair, and for 2 help was in time and treatment was successful (but I still need to be careful and alert *every single day* as treatment goes on).

BTW, BioBased, thank you for the info on LDN! :D

Hi
I have bumped up the original post to bring this thread back to what the original poster asked about, and the thread is titled "LDN Help"

It's ok for members to have different opinions about different medications and/or treatments, but once that point is made, it is preferred please to move on if no longer interested in the topic.
The purpose of the forums is for members to be able to freely share their own experiences and information with one another, and offer each other support.
Here again are the forum guidelines:
http://www.neurotalk.org/community-a...-8-2015-a.html

Thanks.

My doctor suggested LDN and I agreed to try it. The first dose was very low and there were no side effects during this first month of treatment. Unfortunately, I developed some nasty gastrointestinal side effects when he titrated up to the next level and I had to stop taking it. I saw no improvement, but the dose was so low that I am not sure that improvement would be expected at that level. It did not make my CRPS worse, but again it was a very low dose. I am very sensitive to many drugs, but I will give new ones a chance because sometimes I can tolerate them.

My doctor prescribed this through a compounding pharmacy. Some compounding pharmacies have been under scrutiny for improper practices, so if you find one, I would google it and see if any warning flags popup. Perhaps someone knows a better way of checking out a pharmacy than simply googling them.

I personally would avoid buying this online especially if no prescription is needed.

Good luck with your search for the meds that will work for you. :hug:

Shay

In Belgium there's not even talk about such a thing as LDN. Maybe at the university hospitals, IDK.

We always lag behind in these things.

If I offended anyone by bringing other methods and treatments into it, I do apologize. No offense intended.

The LDN Story (A documentary about low dose naltrexone) - YouTube

Barb, US - Reflex Sympathetic Dystrophy (RSD) - Low Dose Naltrexone (LDN) - YouTube

Ooh, thanks! :D

My husband took LDN for years for his MS. It helped him keep bladder control. It had ZERO side effects for him. But if he hadn't done his own independent research and brought it to his neuro, he never would have been able to take it and try it.

LDN - just starting
 

I will let you know just started six days ago at 1.5 mg at night before bed - fast release, filler is Avicel. It was compounded for me. I had to educate my GP doctor in a nice way after trying a pain clinic which would only offer gabapentin. I did the research and brought her articles from reputable sources. I will start 2.0 mg this Sunday for 10 days and work my way up to 3.0 mg in 0.5 mg additions. So far no bad side effects. I think my mood has started to improve but that may be because someone is starting to work with me. This drug takes time to work and I need to be patient.

LDN Help
 

I like you very much as you are very common sense. I am hoping Tata got my response to her as I am just starting LDN last thursday and am new to the group. I started at 1.5 mg and am hoping to move up 0.5 mg every 10 days. My GP got on board and it is being compounded locally with Avicel filler (filler is important for fast release). No bad side effects yet. I also started compounded DMSO 50 percent with rose oil for scent (it can be smelly) on my hand 1/2 teaspoon up to 5 times a day). My hand is less stiff and painful for a small amount of time when used. It will give a faint taste of garlic in mouth. If used don't rub in let it absorb into blood stream for at least 20 min and wipe off excess. This is what I am doing so far in my journey aside from PT and constant movement and just started mental health therapy.