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javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/23/2010 12:12 PM (GMT -7)   
LDN? I've seen it posted a couple of times here and I'm wondering exactly what it is because when it is posted about people taking it it means the dr is on top of things?(just what I've gathered)

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 8/23/2010 2:04 PM (GMT -7)   
LDN is Naltrexone in Low Dose and I just had a big reply here that went poof cause I still get brain farts!!

Anyway.. LDN is starting to be used more regularly with MS.. and was used as a way to get druggies off their meds and to help with HIV/Aids. Now some upteen years later they are looking at other uses. One of them being for Fibro but with the age of the drug they can't get money to test anymore. So some doctors are using it OFF LABEL for numerous things and guess what? It's working for many with Fibro.

My suggestion to call a compounding pharmacist is to get the skinny on docs who prescribe it for Fibromyalgia. Why? because to me it means THAT doc is more open minded and not in a rut. My own doctor knew nothing about it but I gave her the info I had collected and explained that I also knew of forums where they talk about this medication and how it is helping with Fibro. That there did seem to be some play with those that have other issues but for the most part that the 4.5mg seemed to work on the avg. It came time my insurance changed and there was no way I was paying for Savella on my own and I again asked for the switch and gave her the number to the local Compounding pharmacy that I had already talked to and also gave her the number to another doctor who has been prescribing it for his patients. She DID make those calls and within a week called me to say she was calling in an order for the script. Insurance does not cover this I believe and the cost for me was something like 38 and tax brought it to 42 dollars. My co-pays alone for the Savella was 60..

There are pro's and con's to every medication and depending on your circumstance you may still need pain medication of some sort. You can NOT be on pain meds when you start this medication and really shouldn't add any for a month into it. Then if you really have to .. you can take a pain pill 4 hrs after taking your LDN but can not take one I "think" 8 hrs before. Psst.. they really don't want you taking narcotics while on this medication though since it works through the same receptors. LDN will cancel out your pain meds.

Sorry if I stepped on toes.. I just thought it a better way to even look at a doctor.. I have more energy than I did on Savella, I sleep better, I am dreaming again! My mind is more active although I DO still forget things. I still have to take Tylenol but found when my sinuses were clogged that the Tylenol Severe Cold made me feel like Crappola! I still get tired but have added DL-Phen which works with the Dopamine you body produces. The internal furnace that wouldn't shut off ever is now relieved. Note most of that heat was caused by a cholesterol medication and the balance by the Savella and the flashes.. well.. that's just good old Menopause and I will put up with that!

It's not in my head and I'm a happy camper now. :)
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen
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