Thoughts on low dose naltrexone?

[KatieB]

Hi all,

I hope everyone is having a nice day .

I'm on 9-10 mgs of prednisone a day, and haven't been able to get down much lower in the past couple of years. They have tried azathioprine, leflunomide, and methotrexate, which I'm trying again now. I react badly to all of them... Azathioprine put me in the hospital for five days, my bone marrow basically shut down and I was very ill, leflunomide raised my liver enzymes, and methotrexate leaves me with migraines and diarrhea that just comes, it's horribly embarrassing. I'm on the injections and have really tried to work through the side effects, but it's been since September and it's just gotten worse. I'm so sick of side effects! I do fairly well on the 10 mgs of prednisone but, as we all know, that's not a great long term solution as it causes its own problems. I already take plaquinil but it doesn't keep things under control enough without the prednisone.

  I'm not sure where to go from here. I've been doing some research on low dose naltrexone, and I saw that there were a few members who had tried this, at least a couple of years ago. I see my Rhuematologist on Wednesday and wanted to talk to him about it, but I was hoping to hear from  someone who had some experience with it. Is anyone taking this? Is it helping? What side effects are there, and is it worth trying?

  Thank you so much!

[Nymph]

Hi Katie,

You probably saw my earlier posts on this. I did try it and it did help with my most persistent pain issue, my jaw. I lost weight on it and quit but then have still had trouble with my weight anyway, so maybe it wasn't even that. I would say it is definitely worth a try. The only other side effect I had was sleepiness but if I kept it at 1.5 mg that wasn't a problem. You have to find the dose that works for you. I just got the tablets and crused them up and suspended them in water. It's cheap that way. Good luck!

Nymph

[Maria3667]

Hi Katie,

I tried it too, and found it increases eye moisture, but decreases saliva. So for us 'Sjoggies' it's probably not the best course of action.

Good luck!
Maria

[KatieB]

  Thanks for the input!


I just really want to find something that's not so hard on my body, the side effects seem to be almost as rough as the disease.  I'm trying to eat well and watch my diet, but that doesn't seem help as much as I'd hoped either. My blood tests look great on the methotrexate, my kidney GFR came back up to above 60, which is great, but it makes me so sick. Even at a low dose, I just don't tolerate it well. Oh well, I'll talk to the doctor and see what he says.

                           Thanks again,
                                            Katie

[Sharon]

Hi Katie,
I tried it for a short while at a very low dosage but had to stop since it caused
a sharp return of my IBS symptoms.
I would recommend giving it a try since I know it has really made a difference for some people.
If you join this FB group you'll find many success stories and much information on LDN:
https://www.facebook.com/groups/sjogrensandLDN

Best of luck!

[KatieB]

Thanks Sharon,

  I'll look it up. I have ibs issues too, but it still might be worth a try...

                    Katie

[Sharon]

I have unusual reactions to many meds,
so I'm definitely not an indicator of what others may experience.
It's considered a very low-risk option, so it's worth trying it out beginning at a very low dosage.
If you develop any side effects you can always stop.

[Deb 27]

Katie, the only way to tell for you is to try it. I tried it and I had an increase of pain and insomnia. I really wanted it to work and tried a few times. I was put on it to see if it would help my thyroid and I just couldn't take it long enough to see. I hope you have better luck!

[warmwaters]

I used LDN for about 4 years, and found it helpful. I took it at 3mg per day. Timing on taking it is important, discuss with your doctor but roughly 1 -1 1/2 hours before sleeping was right for me.


My doctor gave me 1 mg pills, and I went up 1 mg at a time (maybe each week - no longer remember) until I found where I could no longer handle the side effects (grogginess). The goal had been 5 mg, but I got some relief at 3 mg.

I didn't see much difference in eyes or mouth. The symptom this helped me the most with was muscle pain. I sometimes get aching in my upper arms and sometimes my legs like I've been doing vigorous exercise for hours.  This was much less frequent and milder with LDN.

I only came off of it because of a medicine conflict. Otherwise, I'd be comfortable still using it.

[KatieB]

 Thanks to everyone for all the great info and advice! It sounds like it's worth asking about, but not the miracle drug it's portrayed to be. Kind of what I figured actually.... Still, I'll see what he has to say, it's worth trying at least. A reduction in pain would be nice, I don't want to be any more groggy though. I'm loopy enough without adding to it! Don't you love the tired=stupid aspect of these diseases?
 
  Anyway, thanks again and have a nice night.

                                              Katie