I just read about this. I am wondering the same. Seems to have no serious side effects
I'm trying it now for the second time (the first time I didn't like the side effects) and it's really helping the stiffness in my fingers. It was so much better right away. I wasn't having much pain with my diet and supplements unless I got glutened while eating out.
Hi sarah ' what dose are you taking ?
Donna Garland I'm taking 1.5mg now
Gave me horrible insomnia, even when taken in the am.
oh no. I already have insomnia.
Yea, like I didn't sleep... For days...
Karen Glenn, ehat dose. Did you try day dosing? Where do you stand eith LDN now?
I started with low dose, taken first thing in the am, with the intent of titrating to a higher dose, but never did due to side effects. I no longer take it, but encourage others to try for themselves. One never knows how they will respond unless they try it. Ironically, some of the more benign therapies (ldn, plaquenil, quinacrine) I have not tolerated and yet methotrexate and cellcept I am fine on... Go figure!
I have just started it. I read that if you get into bed and then take it you have no problems getting off to sleep. Three nights in a row it has worked for me. A couple of times I took it an hour before bed and I was awake till 4am
May I ask what dose?
Does this need a prescription?
Yes it took me time to find a doctor willing to prescribe it to me. I had to see a homeopathic do and pay cash. None of the doctors covered under my insurance were willing.
Thank you! I will look around and see if I can find someone
Join "GOT ENDORPHINS Low Dose Naltrexone" FB group. They have "files" to prescribing physicians.
not all doctors that prescribe are on that list. My doctor isn't. So if you don't see any in your area, don't give up. I google searched for homeopathic dos and both of them prescribe it and talked about it on their website. My homeopathic do also does vitamin c infusions and homeopathic medicine.
True! Have you had the infusions
I take 4,5 mg per day. It took away the horrible fatigue and slowed the progression.
I have a rheumatology appointment if this reduces fatigue, Lord knows I want to try it. The fatigue is making me crazy.
I wonder why this drug is not offered as a first line of treatment. Maybe because it does not cost as much and no money to be made
It's an "off-lable" medication. Besides where would the pharma earn their income...?
Why is it hard to get prescription?
It's an off-lable medication. Which needs a script. Not all Dr's know about it or beleive in it.
I have RA and have found relief with avoiding inflammatory foods such as sugar, gluten, soy, dairy, nightshade vegetables and nuts/seeds alongside Low Dose Naltrexone (LDN) which is an off-lable medication which helps produce endorphins which those with Autoimmune diseases are naturally low in endorphins. It helps orchestrate the immune system. It is very individual and has minimal side effects. I've been on it for 15 months now. Started at 1.5mg for nearly 5 months before increasing to 2.25mg to 2.25mg for another 5 months. I have been on 3mg since Jan and eill be increasing to 4.45mg here soon. http://LDNscience.org/ Minocyline and Rheumatoid Arthritis video documentary from the early 80s. It's an antibiotic therapy which is said to treat the root cause of RA being it's believed to be caused by bacteria and infection of some sort. I'll be starting it soon. Also research vagus nerve and Rheumatoid Arthritis. High quality probiotics daily has also really helped me with morning stiffness. When strict it has decreased significantly to 15-60 minutes vs all day every day. Also search FB groups "GOT ENDORPHINS Low Dose Naltrexone" & "Low Dose Naltrexone and Rheumatoid Arthritis"
Ok, how high does it go? Cause with increasing, clearly that's an on going thing... So what happens when your maxed out? You can't increase anymore...
The idea behind using Low Dose Naltrexone (LDN) - which is Naltrexone only used in a low dose to benefit autoimmune diseases and cancers is the 4.5mg is an ideal maintenance dose. Nearly every person gets 24.5 and just maintains
The way LDN works is by blocking opioid receptors, which causes the body to produce more endorphins. The benefits occur when the drug has cleared from your systemand the body is flooded with endorphins, which apparently modulate the immune system. But if you were to take a high dose, you wouldn't get the same benefits. Less is sometimes more and often, over time, people decrease their dose rather than increasing it. LDN works in other ways too.
Well put Monica Lane
Did any of you also have the gene HLA-B27
Hi interested to know about the genes? What have you tested for and learned?
Yes I do
Betty I have not tested for that. How does one know?