Anyone with low dose naltrexone experience?

[cathie]

Hi,

Our holistic general practitioner, who has been patiently working with us on AP for scleroderma since early July [zero skin involvement, presented only as joint pain several years after onset of Raynauds], would like to try low-dose naltrexone. It seems to be very safe and could offer some benefits, particularly since the AP has not yet shown any reduction in symptoms.

Does anyone have any low dose naltrexone experience to share?

Thanks, Cathie

** We’re new to posting on these boards, the patient is my 15 year old daughter, on mino 100mg
twice a day since July 2015. Labs identified a positive ANA, centromere pattern, considered
highly suspicious for sclero – we did no further diagnostics but went straight to AP. My husband’s
RA was cured more than 8 years ago following a two year course of minocycline.

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

[Spiffy]

I have not had an experience with it yet, but from what I have studied I would not mind her trying a tiny dose and working up to 4…I guess it is mgs. I would start out taking it in the morning. It is usually done at night, but if there are any weird side effects…you would want her awake. Then move to evening time. I would not hesitate to try it. At best, it could really help. At worst, you would just quit taking it. Let us know what you decide. It is great to hear that it put your husband’s RA into remission. Is he no longer on AP?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Airen]

I have RA and tried LDN for 6 months. Started at .5 mgs and worked up to 2 mgs. In those 6 months it did not make me feel better. I did have the vivid dreams in the beginning everyone talks about. I also had headaches and fatigue. Those side effects may be due to the fact that I ended up on a dose not right for me. I’ve read over and over that with LDN it’s about finding the dose where you feel your best and less is sometimes better. Not everyone needs to get to the max dose of 4.5 mg. there are several LDN groups on FB with a ton of info.

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[redrock]

I was on LDN for a few years after I had an attack of iritis and was scared to death of getting another. But then I started having a lot of surgeries and needed opiates so I went off it. Nothing bad has happened since I discontinued. It works particularly well for people with MS and Crohn’s, I hear. By the way, I was only prescribed 3 mg.

[quilter]

I have MCTD and I believe it is in remission. I’ve been taking Naltrexone 4.5mg for about 2 years now. I don’t have any side effects and I don’t see any significant improvement in my disease except that I have more energy and productivity while on the medication.

The major therapeutic action of LDN is the restoration of the body’s normal production of endorphins, so it is important that this medication is taken at night so that it’s action occurs during sleep.

I suggest that you study the book, The Promise of Low Dose Naltrexone Therapy and study the web site link http://www.lowdosenaltrexone.org There is also a PDF file How LDN works – Controlling Cell Proliferative Diseases
I would not be inclined to give this medication to a child without careful consideration.
You can do a search for the subject of LDN on the forum and you will find many posts.
I hope this helps you.
Carol

Here is a warning to remember “In an emergency situation that requires that opioid analgesia be administered to a patient who has received Naltrexone, the amount of opioid required may be greater than usual, and the resulting respiratory depression may be deeper and more prolonged. Patients should be closely monitored for altered efficacy and safety.”

Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta

[pdenham]

Hello,I read a couple books and joined a Facebook group to learn more about LDN. I decided to try it and see, as it looked promising. I started with 1.5 mg to start out low and slow.I expected not sleeping which happened from the first night but then I experienced some symptoms that were not written about anywhere.I experienced brain fog and a mild depression. Also, I began having leg pains at night and I developed headaches daily. I was only on it for 2-3 weeks and quit. I was having good success with AP so didn’t want to deal with it. All my symptoms went away right away.:) I took it for Limited scleroderma.

[DMW]

I tried LDN and had a flare. It took quite awhile to settle. I only took .5 to 1mg.

I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T

[cathie]

Thanks, I appreciate your input. My daughter did start the LDN in October [1mg at bedtime] and I have to say that both my husband and I believe that we saw a difference after about a week! A certain “lightness” returned to our daughter that had been missing for a long time. Hard to explain but we believe that she seems a little less burdened. She reports no reduction in pain or other symptoms but we continue to believe that she is acting more herself since starting LDN. Her dosage was recently increased to 2mg and all seems well.

Sadly, she has so far failed to have a positive response to AP. She began mino in July 2015 and continues 100mg [generic mino] x2 a day with no change. We visited Dr S in Ida Grove IA in November for a week of IV clindamycin therapy. So far that has not seemed to offer any improvement.

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

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