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Low Dose Naltrexone

Started by Deb 27, July 08, 2016, 03:33:23 PM

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Deb 27

Has anyone ever tried LDN therapy for an auto immune disease? My thyroid is just all messed up so my doc recommended it. I don't think it could hurt.... I saw that it is mixed in with   wellbutrin in a pill for weight loss. Feeling better and some weight loss might be good. Maybe I am too optimistic.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Nymph

Yes, tried this. It completely resolved my neck and jaw pain. I did not notice any other improvements. I had to take just 1.5 mg or it made me very drowsy. I lost weight on it, a possible side effect which I could not afford, so I quit. May try again someday after I gain, if that ever happens.
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

warmwaters

I've been taking it for several years now.  I take 3 mg. It helps me with muscular pain.  I also take wellbutrin, but was taking it for mild depression before we tried the LDN. 

My doctor proscribed it in 1 mg capsules, and I was to up it by 1 mg following some time schedule (that I don't recall).  The max was 5 mg.  At 4mg I was too drowsy on it.

I take it about 1.5 hrs before bed, and am getting sleepy as I'm ready for bed. 
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

jazzlover

And side effects or downside to it?
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

Sharon

#4
I tried it but suffered from some bad side effects even at the low dose of 0.5mg and was unable to raise the dosage as the side effects became intolerable when I tried to raise to more than that.
It seemed to make my immune system go into (even more) overdrive, causing severe night sweats, joint pains and an acute return of long gone IBS symptoms.
I do know it helps some others though and that my reactions appear to be rare.

You can consult with many others here:
https://www.facebook.com/groups/sjogrensandLDN/
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

jazzlover

Thanks, Sharon. Since we have similar issues, maybe I'll pass on trying that one.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

warmwaters

Quote from: jazzlover on July 09, 2016, 03:23:08 PM
And side effects or downside to it?

As I mentioned, makes me sleepy about 1.5 hours after I take it.  At a higher dose, I was too groggy, but on the current dose, no other issues.

Timing is important with this med, as it is working with sleep cycles.

I notice the difference in pain if I don't take it for a few days.

Only downside for me is cost - it's a compounded med, so my insurer doesn't cover it. Costs me about $30 a month.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Deb 27

Thanks for the replies. I could use something to help me sleep better but I hope I don't have any other side effects. Mine is 4 mg.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Deb 27

Well, I've tried the low dose naltrexone and it was actually 3 mgs. I felt very drugged and actually had some muscle spasms in my sleep from it. I felt hung over the next day until after lunch. It was very strange. I don't know if I should keep trying it or ask my Dr. for a lower dose.  I dunno, me and medications are a big ball of wax.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.