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Old Sat Jun 1, 2019, 01:00 AM
Stevie K Stevie K is offline
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Join Date: May 2019
Location: Phoenix, Arizona
Posts: 3
Low Dose Naltrexone

I was wondering if anyone has experience or insight with using low dose naltrexone (LDN) as a treatment for autoimmune aplastic anemia, PNH and/or general symptom management?

A little background on my case:
In 2010 I had mildly low platelets, low haptoglobin, elevated bilirubin and positive ANA. Over the next few years my platelets slowly declined, then WBC, RBC, H&H. I was eventually diagnosed with autoimmune AA in 3/2016 after bone marrow biopsy (10% cellularity), then PNH in 10/2017 (initially tested positive with 32% PNH clones in 2016, but inexperienced hematologist said test was negative).

I started eculizumab (Soliris) in 12/2017 and continue to receive treatments every 2 weeks. I have also tried many different non-pharmacologic modalities (acupuncture, various herbs/supplements, red/near infrared light, autoimmune paleo diet) and maintain healthy lifestyle habits (sleep 8h+ per night, paleo-type diet, low stress as much as possible, regular exercise, etc.). Since starting treatment, I have had some improvement in my labs (see below) and symptoms, most notably in shortness of breath, chest pain and back pain.

Prior to Soliris treatment (10/2017):
PNH clones:
granulocytes 72.55%
monocytes 69.83%
RBCs 6.47%

WBC 2.0 L
RBC 2.84 L
H&H 10.5/32.0 L
Plt 51 L
LDH 683 H
Haptoglobin <10 L

>1 year on Soliris treatment (1/2019):
WBC 2.6 L
RBC 3.32 L
H&H 12.3/37.0
Plt 68 L
LDH 212
Haptoglobin <10 L

PNH clones:
granulocyte 19.63%
monocytes 83.66%
RBCs 6.11%

Reticulocyte count 2.4
Absolute reticulocyte 0.076

1.5 years on Soliris treatment (5/2019)
WBC 2.7 L
RBC 3.32 L
H&H 12.1/36.4
Plt 76 L
LDH 212
Haptoglobin <10 L

I continue to struggle with several symptoms, the most debilitating being my low energy, brain fog/poor concentration, and headaches on a daily basis. I am considering starting LDN, which has been used in the treatment of various autoimmune diseases and chronic fatigue (among other conditions) for more than 30 years. Effects of LDN include increased endorphin release, modulation of immune response and reduction in inflammation. Although I cannot find any specific research in aplastic anemia or PNH, I am interested in itís potential.

Thank you for any suggestions/insights you may have.
__________________
Stevie , age 31, dx AA (3/2016) and PNH (10/2017), on eculizumab (since 12/2017) with limited improvement in sx and CBC; various non-pharmacologic modalities and healthy lifestyle habits have aided better QoL
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