Low dose Naltrexone for POTS helping alot

My son was taking 4.5 mg. And I decided to try 6 mg but am unsure if it made a difference.

Hi I've been on LDN for about 4 years. I've gone off and back on a couple times and it kind of you don't even realize it's helping with pain until you off it and say well I guess it was helping. It's very good at resetting your immune system.

Frankly I heard about it through somebody and I found a doctor in town if you would prescribe it and started seeing her. She's a neurologist and I just so happened to have autoimmune pain disorder and epilepsy so it worked with my insurance to pay her. Insurance does not cover LDN and unfortunately if you haven't made in a pharmacy it's not exactly cheap, maybe $40 a month.

But I'm a nurse so here's what my doctor let me do. (Possibility for you Eyja?)
Naltrexone is a 50 mg pill. I crush it and mix it with 50 cc's of distilled water. That makes it 1 mg per cc. (Ok, ml, I'm an old nurse! Lol) That means that I can go from 1 to 1.5, to 2 to 2.5 etc on my own without having to get
a new doctor's Order each time I stopped for a little bit and then need to titrate back up again.

As the 50 mg Naltrexone insurance does pay. She prescribes 30 at a time which gets me through about a year and a half and cost me about $20. The CPAP water I now use costs me more than that! It's so easy to do it's too bad doctors don't let people do that instead of paying compounding pharmacies. There are so many places to get the Naltrexone powder you never sure if the compounding pharmacy is actually doing it right. It needs to be short acting and frankly I don't trust a lot of Indian and China manufacturing companies.

I always do research on generics and find out which one is the best. So ask for the Naltrexone I did find a company in the United States that manufactures it and that's the one I insist on getting all the time.

Same with my Lamictal, there is only one generic that actually is known to stop seizures (Unichem? I think, and the only one Walmart carries)
tho I take it mostly for bipolar and pain.

Sorry off track. I had to talk my doctor into letting me do the mix and it might just be because of me being an RN that she let me, but it's not hard to figure out. I use a 50cc syringe to drop the water and I use a 10cc syringe to to dose it every night. I also keep it in the fridge and mix it with a bit of juice.

LDN has actually been approved by the FDA for CRPS. I'm actually a little bit afraid of them approving it for too much because then I see the price going up and up. Right now naltrexone is dirt cheap. In fact it doesn't even come brand name anymore.

I actually did about a year research before I started on it. It cam help many autoimmune issues. Parkinsons, MS, fibro, and even some cancers. A huge long list.

Hope this helps.

Thank you!
I do the same, mix the pills in water. So much cheaper.
Good luck!

May I ask what dosage the others of you that are taking it are on? Thnx.

Which company did you consider to be the best in your case?

The specialist that we saw prescribed 4.5 mg. I decided to try raising it to 6 mg, but can´t really tell if it´s helping more in that dose. I just know that my son is much better than before he started on LDN.

I had been on 4.5, went down to 4 then I came off at xmas time and didn't go back on till March.

Because I was off for a while, I went back to 1mg for 2 weeks, 1.5 for 1 week, 2 for 1 week, and now i'm on 2.5. I plan to go up to 3 and stop there for a while. The lower the dose the better. I'll probably stay at 3 for a month and see if I notice less inflammation. Probably won't be long enough to tell but I think 3.5 or 4 will be the highest I go this time around.

It seems you can't tell if it's helping until you go off. It's April and I was off for 3 months. It took that long for me to facepalm and say "oh, i'm hurting more. duh, I should maybe go back on LDN." So, now it will be a while again. I plan to be on for life. Going off at xmas is kind of a long, not smartest, story.
Betty

this is the manufacturer I get mine from. You have to have the dr write "mallinckrodt pharmaceutials only." (I think I get mine at CVS. You just have to call around and see who carries this manufacturer.

I can't say in reality if this is better than any other manu comp, I do know which companies in India I will never use. Typically, before going on a med that is vital, I will research online which manu if better. Example, I take Toridol IM at home for pain prn on occasion. Helps for about 24 hours. I went to get a refill and gave myself a shot and it was like I had injected water. Zero help. I looked up the previous manuf and the new one, different. I dumped them and found a place that could give me the old manufacturer, had the script transferred to them and got the refill I could get in 5 days.

If a medication give you a headache, for example, you can look up online and find out that people who get that drug from "x manuf," have headaches. Switch to a different manufacturer, and headaches gone. I do know for all meds, I believe i should say, we should not be taking a different manufacturer each month when we get a refill. They are not all created equal. If your pain meds suddenly don't help this month, are they the same? Due diligence with all generics.

Never go higher than 4.5 and thats usually for a larger man?

Less is more with this drug. It's not about taking it, it's about how your body kicks into gear when it wears off. The dose we take should wear off in 2-3 hours.

6mg might not be helping at all. Too high a dose. The least you can take, the better. Somewhere between 3 -4.5 is norm. Some take as little as 2.

He might do even better if you go back to the lower dose. At some point, it takes too long to get out of your system and your endorphins don't kick into overdrive like they should. It's not about what you take, the medication does nothing to help you, it's the sudden stop of the low dose overnight (usually) that is how it helps. Less is more.

It's curious you would see a specialist then not trust that the dose he prescribed is correct? I even wonder if 4.5 is high for a kid. (depends on his age and size.) 4.5 is really the highest one should be on. I've done so much research, seriously. There are tons of youtube vids. There used to be a Yahoo email group (don't know if it still exists) but there were some scientists on there that were on it and had amazing info. I picked brains for about a year before I went on.
Good luck.

What is ldn