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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sat Jun 1, 2019, 01:00 AM
Stevie K Stevie K is offline
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Location: Phoenix, Arizona
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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.
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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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  #2  
Old Sat Jun 1, 2019, 10:14 AM
Marlene Marlene is offline
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Here's a thread on LDN you may find interesting. If the link doesn't work, then do a search on LDN and the few threads that talk about LDN will be be listed.

http://forums.marrowforums.org/showt...&highlight=LDN
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sun Jun 2, 2019, 01:05 AM
Stevie K Stevie K is offline
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Thank you, Marlene! The link did work. Iím glad to see someone had a positive response symptomatically. Iím currently in the phase of trying to find a provider that will prescribe it to me. So far my hematologist has just deferred me to following up with a rheumatologist for their input.
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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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Old Sun Jun 2, 2019, 09:30 AM
Marlene Marlene is offline
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You may want to call a compounding pharmacy in your area and ask them if they know of any doctors who prescribe LDN. It may be difficult to find a Rheumatologist who uses it. Also, if you haven't already, get your hormones checked, especially testosterone and thyroid.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sun Jun 2, 2019, 10:06 AM
Marlene Marlene is offline
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Here's a link for pharmacies working with LDN.

http://ldninfo.org/#How_can_I_obtain_LDN
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Sun Jun 2, 2019, 11:40 AM
Val.B Val.B is offline
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LDN worked for me!

I can attest that ldn works wonders for energy! I felt an increase in my energy levels within a month and have felt better the longer I take it. I also believe it is a big part of my healing! After 2 1/2 years of critical platelets, mine are now 67k and continue to slowly climb. I haven't needed a transfusion in over 1 1/2 years. I'm fact, my hemoglobin is finally in the normal range! (Overall rbcs still low, but climbing)
My wbc and neutrophils remain low, but keep me well despite working with 24 ten year olds! (I think acupuncture helps!)

Sounds like you are on top of many positive lifestyle choices. Keep it up! Other suggestions if you don't already: watch toxins (food, water, grooming, cleaning), make sure you don't have any vitamin deficiencies, heal your gut, and keep the faith. Also, of course, work with your doctor / naturopath to make sure ldn won't interfere with anything you are taking. My ND was the one who prescribed my ldn, but I think any doctor could...if they are willing. I have a compounding pharmacy in my little town of 8k. I hope you are as lucky. (I think you can order online.). My ND also said dosing is very specific by individual. I started on .5 mg and gradually increased to 4.5 mg. I have stayed there ever since. As for side effects, I do often have weird (not scary) dreams and I find I can't take it after even small amounts of alcohol (1 glass of wine!) or I feel awful the next day. I never saw the alcohol thing as a side effect before, but it's my experience. (We both know you should limit alcohol anyway...)

One more thought: I also take a medicinal mushroom blend by Gaia. It's called Everyday Immune. My ND found a study they had done about the power of these fruiting mushrooms (and adaptogenic herbs in it) to "retrain" the immune system. I think it's helped in my healing.

Good luck and keep fighting for your wellness!
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Val, 45. Diagnosed with MAA in March 2017. Considered to be autoimmune due to a small PNH clone. Alternative treatment is working!!!
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  #7  
Old Sun Jun 2, 2019, 10:26 PM
Stevie K Stevie K is offline
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Thank you for the additional information, Marlene I actually have had some of my hormones checked. My thyroid was normal - TSH 1.63, FT4 1.0, FT3 3.0, antibodies negative. Testosterone was very low even for a woman - total serum <3 ng/dl (normal is 8-48 per the lab reference range, but what I have researched women should ideally be above 25 based on my age) - I have ALL the classical symptoms of low testosterone but of course some of these symptoms are also symptoms of AA and PNH. Other sex hormones, including DHEA, estrogen, progesterone, ect. all normal. I discussed this with my hematologist, but he dismissed it (as he usually does). I saw a women's hormone specialist (took 2+ months to get appointment with her), and she did not recommend testosterone replacement or any other treatment for that matter. She was very discouraging and basically said even if I did go on treatment I wouldn't feel any better. I self-started a low dose DHEA, but had to stop it because it made my headaches so much worse. I am actually still interested in trying testosterone replacement as I do personally believe it would help.

Val, THANK YOU for sharing your success story with LDN and additional recommendations, and of course for your encouraging words. I am so glad to hear that you have had such good results! I hope that continues for you This definitely makes me more motivated to pursue LDN. I know there are online providers who will prescribe it, so may have to go that route, unless I can find a good ND. Honestly, I don't know why my hematologist is so hesitant to prescribe it. I had done quite a bit of research on it before I had talked to him (and it seems to be relatively benign side effect wise), so it's not like it was an off-the-wall request.
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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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  #8  
Old Mon Jun 3, 2019, 12:11 PM
Marlene Marlene is offline
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If you decide to pursue testosterone I would suggest using a bio-identical topical cream and start at a low dose and work up. When using a topical you have be careful to really wash your hands and use separate towel to avoid others, mostly children, getting in contact with it.

I hope you are able to get the LDN soon. Please let us know how it goes.

Wishing you the best....Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Tue Jun 4, 2019, 03:24 PM
GoodDay5150 GoodDay5150 is offline
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Hey Stevie K. In my opinion (I am not a doctor, just a patient) BMT may be an option for you. Since you have both AA as well as PNH, you have 2 debilitating blood disorders that are keeping you from leading a normal and healthy life. On the positive side, you are still relatively young, and as you prob. know, PNH is usually detected in people close to your age. Being young will aid in your recovery if such an curative treatment plan is chosen. In addition to your current physician(s) you may also have other specialty clinics in your area who can advise you. There are many online resources available as well. If you search my user name you will find many posts from me in respect to my PNH journey and treatment plan implemented by my HMO as well as a specialty clinic affiliated w/ a hospital with a transplant program.

Good luck in your treatment

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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