Low Dose Altrexone

[Darlene]

has anyone tried low dose altrexone for POTS? if so, did it help?

http://www.lowdosenaltrexone.org/

[Guest Alex]

I haven't but I'd be interested to learn more about naltrexone - particularly if anyone had used it for dysautonomia. Have you tried searching the forum for it? I believe this is where I first heard about it, but I can't remember the name of the dinet member who brought it up.

From what I heard some Lyme patients seem to find it beneficial as well as some diagnosed with certain autoimmune diseases.

The science behind its mechanism of action seems to be blurry at best, but I admit not having read much about it.

Alex

[Chaos]

http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/

This is a link to a synopsis article that describes the benefits of LDN and what some of the science they think is behind it. The site is targeted more to ME/CFS and fibromyalgia patients so he relates the data more to those conditions. However, given the overlaps between the ANS issues found in ME/CFS patients and POTS patients, there may be benefit for both populations.

I have been using it for about 4 months and have found it helpful for sleep and pain issues. During this same time frame my pulse pressure has been better as well, but not sure if that's related to using this or something else. When I asked my doctor (who is very "scientific study" oriented) about trying it, his response was "There are LOTS of studies that have shown it to be beneficial so I have no problem prescribing that one."

It's a compounded drug so you have to be sure you use a reputable compounding pharmacy and increase dose slowly. Usual final dose is 4.5 mg at bedtime but you may find a smaller dose hits "the sweet spot" as my doctor calls it.

[looneymom]

Thanks for sharing this information. I would like to try this with my son. I will mention it to his cardiologist and see what he thinks. It seems safe and at least they have done some studies with it.

Rachel

[TCP]

There are several sites that mention LDN. I tried it for my ME/POTS/AN/PN etc and I couldn't take it in capsule form so opted for the transdermal cream. I was on it for 2 months but stopped as at that time I was feeling so unwell, but it may not have been the LDN as I had started on a beta blocker and duloxetine at the same time and both of these have made me very unwell.

It's worth looking into

[Psalm 23]

A few years back my Rhematologist prescribed LDN to help with my Fibromyalgia symptoms. I took 3.0mg for 3 months then 4.5mg for 3 months but found to my disappointment that it did not relieve any of my fibro symptoms. I didn't realize at the time that it was also a possible treatment for pots. In thinking back it did not help my pots symptoms either.

Janet

[kitt]

LDN is prescribed to CFS patients primarily as an immune modulator. Very specifically it is capable of shifting the immune system from being TH 2 dominant to TH 1 dominant.

It can also help some people with sleep and pain.

I had a horrible reaction to it.

This is not something to be taken lightly. I've noticed that in the CFS community the people that seem to tolerate it well have not been sick as long and are generally on the 'less sick' end of the spectrum.

CFS is a spectrum illness. Like MS, some people are only mildly affected while others are completely debilitated by it. Dr. Cheney always has said, 'The longer you're sick with CFS, the longer you'll be sick'....Meaning that if you can begin some of the immune modulators early, (and there are several), then you'll have a much better chance at keeping the illness from progressing.

Good luck with LDN. As a tip it's generally recommended to start at a very low dose and work up slowly. Also beware of who compounds it. Some people without insurance are getting LDN through the mail from India. I wouldn't go that route.