Improvement with Low Dose Naltroxone
Posted , 7 users are following.
I've been taking LDN (low dose naltroxone) for almost two months now and it has been helping a great deal, so I'm just putting this out there in case anyone has considered it, with the caveat that anyone thinking about it does the reading and research first.
It's not mainstream and maybe the verdict is out on long-term side effects, which seem to be mild, if any, at this juncture, and how/if it interacts with other meds, and it also doesn't seem to work for everyone but it worked for me. I'd say I'm about 80% back to where I was pre-PMR. I have had no side effects, other than interesting dreams.
Because we're all different in how PMR has affected us and some have other conditions in addition to PMR, my situation is that aside from some osteoperosis that has shown up, I'm very healthy and I no longer take prednisone, so LDN is the only medication I take.
I don't want to give anyone false hope, because we're all unique in our journey with PMR and our health conditions in general, but I feel that I've begun to get my life back and I'd like to think that others will have that same experience. But, again, do the research.
1 like, 14 replies
FlipDover_Aust diane67131
Posted
How long have you had PMR?
diane67131 FlipDover_Aust
Posted
Thank you! I've had PMR for four years. I've gone the usual route - feeling crippled, undiagnosed for a couple of months, ending up in the hospital, then feeling great with prednisone until I gained 15 pounds, which is a lot for me, felt awful, couldn't sleep, got the camel back, did the tapering, flaring up and having to start all over again, up and down and getting frustrated and depressed. It's been a nightmare, so I feel very fortunate to be feeling so good now. I'm not 100% but so much better than where I was.
FlipDover_Aust diane67131
Posted
your 'journey' sounds very familiar... do you think that the PMR has gone into remission, or the LDN keeping it at bay, so to speak?
diane67131 FlipDover_Aust
Posted
I'm definitley not in remission because I have some joint discomfort, mainly in the morning when I wake up, but it's not that unbearable pain that I had. I'm just a little achey, then I get up and move around and it's not so bad. I didn't take the LDN one night and felt quite a bit worse in the morning, so that pretty much was a good indicator that it's helping.
karen81902 diane67131
Posted
diane67131 karen81902
Posted
I know how you feel, Karen. Sometimes iI've felt that life wasn't worth living.
To answer your question, I am not taking prednisone any longer. I don't have to take any other meds fortuntately.
There's a ton of information on LDN, and quite a few studies. They're smaller study groups, as opposed to the more comprehensive ones that you see with more mainstream meds, so you have to take that into consideration, but the studies are also encouraging for so many conditions. I suppose it's a risk but so is taking prednisone. I'm only taking 1.5mgs, so small dose.
karen81902 diane67131
Posted
diane67131 karen81902
Posted
by my calendar, it looks like I was taking 1mg in February and 7 weeks later I was off it. I was cutting it back gradually, probably cutting it in half. I know I was doing the slow taper that is advocated on this forum. I'd been on 2mgs for a while and slowly decreased until I was off it. I didn't drop it quickly. Like most of us though, I started getting uncomfortable again though which is why I ended up trying ldn.
karen81902 diane67131
Posted
diane67131 karen81902
Posted
artfingers diane67131
Posted
I just read some of the research. Sounds promising. I think I shall have to discuss this in three weeks with my rheumatologist. Meanwhile, I'm at 7mg pred tapering down to 6.5 of pred. So can't stand the pred. Helps me function tho, thankfully and I have had a delightful summer of kayaking, climbing, jogging, hiking and swimming. I am so grateful for that!
diane67131 artfingers
Posted
If you're doing well on 7mgs with prednisone, that's a good thing. You're getting there! I'm with you, not a big fan of prednisone either, but I agree that it's wonderful to be able to function. Thank goodness it's there or we'd all be in trouble. Your doctor may not be familiar with ldn. Mine wasn't at all and not interested in learning about it, much less prescribing it so you may run into that problem. I had to look elsewhere.
artfingers diane67131
Posted
Can you private message me the dosage prescribed. I noted 4.5 for ldn but that in U.S. it is hard to get in that dosage. My doc is a delightful woman and she does seek to learn, keeps up with the latest, I like her alot, so far. I am lucky to be so healthy and active. I managed to climb mountains I couldn't last year before being diagnosed, back when I wasn't even able to barely walk. I just can't stand the weight sticking onto me that won't budge. Ugh. Other issues too that of course come w/pred. I'm slowly slowly reducing but as soon as school starts and I have to teach again, BAM, my stress goes way up so it will be hell to pay. One more year to go teaching...I can do it!
diane67131 artfingers
Posted
Yes, I'm going to do that right now.