I haven't been to med school, but here is my theory on meds for systemic autoimmune disease. If it is not going to slow down the damage (systemic means it hits every cell of the body, though each separate disease seems to have a favorite area), then I'm not going to take it!
I'm going for the med that is going to keep me as well, as functional, as pain free as I can be NOW!
I can see with my own eyes what the Psoriatic Arthritis (spondylitis type, meaning it targets spine) is doing to my bones and joints. I saw how fast being off Enbrel for a year the joint damage stepped up, and if what I have is moderate to severe, I'm just NOT going to do severe well.
This is how I approached it.
I asked my doctor, “Will it hurt me?”
His answer was “No”, so I asked for a prescription to try it. If it helped, great. If not, then I really wasn’t even out much money, and just a little time. If I could take it again now, I would do it in a heartbeat and not look back. JMHO. It took 6 months to get full results. All patients are different though.
Thanks for all of the replies!
I've been taking 3mg for a few months now and it does take a bit of time to work. My parotids are going down and even though I never really had a huge issue with dry mouth, I'm definitely producing more saliva. I'm going to continue taking LDN to see what other positive effects I receive.
I also changed my diet to AIP and I'm taking certain supplements. I feel blessed that I'm able to treat my SS this way at the moment and hope to continue to do so.
I've been taking LDN for years. The one side-effect I had was disrupted sleep from taking the LDN at bedtime as is usually advised. However, I had to give up doing that and take it in the morning instead, but it seems to be almost as effective for me as when I tried to take it at bedtime.
Just a heads up, Plaquenil isn't an immunosuppresent and the occurrence of side-effects is fairly low, which is part of the reason it is a common starting place for helping relieve fatigue and pain from SS.
Olive, I am glad that you are getting some relief with your new med. As with always with our issues, stay in close contact with your doc. These tend to be decisions that have a lot that needs to be considered so it really is very personal.
I know this is an old discussion but I am new to the group and have been on LDN for 3 months…i like it so far. It has allowed me to function better have way mre energy and sleep well. no side effects. Has anyone else tried it yet?
I am also on LDN looks like this is a old post, Is anyone else on it?
I’ve read a lot of good reviews about LDN, reading a book on it now. First heard of it listening to paleo podcast , Pheonix Helix. I intent to try LDN with the Paleo diet. Currently taking methotrexate