Is anyone using LDN for Sjogren's?

Posted by giova @giova, Apr 4, 2025

I really need to find a specialist in New York who treat Sjögren’s disease with Low Dose Naltrexone. In United Kingdom that is the treatment specialists give to patients and I really would like to try. Thank you for your help!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for suetex @suetex

I've been taking it for about 6 years (for autoimmune diseases such as Crohn's, PMR and Sjogren's) and I can't say I have experienced any fatigue. I feel very certain that it works for Crohn's. Can't tell about the others. But since I have been symptom and medication free (except for the LDN) I feel pretty good about it. I take just 2 mg- because 4mg didn't make any difference. I say try it carefully. Start with a low dose and work up. And there is lots of research on to look at. Good luck!

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I take it for Crohn’s too. It seems to help. I might reduce to a lower dose because I don’t know if taking 5mg is better than 2.5. I heard about it on Reddit and people swore by it. So glad I found it!

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Has anyone used LDN to treat SJOGRENS?I am fearful of using prescribed PLAQUENILbecause it gave me severe migraines,

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Profile picture for ginger55 @ginger55

Has anyone used LDN to treat SJOGRENS?I am fearful of using prescribed PLAQUENILbecause it gave me severe migraines,

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Hello @ginger55, welcome to Connect. You will notice that we added a little to your discussion title to help members who have tried low dose naltrexone (LDN) find and share their experience with you. I'm tagging @deborahyost3 and @suetex who have posted in other discussions about using LDN for treating Sjogren's.

While you wait for other members to respond I thought you might find it helpful to scan through the following discussion to learn what others have shared:
-- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @ginger55, welcome to Connect. You will notice that we added a little to your discussion title to help members who have tried low dose naltrexone (LDN) find and share their experience with you. I'm tagging @deborahyost3 and @suetex who have posted in other discussions about using LDN for treating Sjogren's.

While you wait for other members to respond I thought you might find it helpful to scan through the following discussion to learn what others have shared:
-- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/

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Hi. I have Sjogren’s disease but I was started on LDN before the neuroblock was placed for my TN. I suffer from different types of neuropathy with this Sjogren’s disease. The explanation that I was given by my pain/anesthesia specialist is that my nerves are in haywire and it will help the neuroblock to work well.
I do still deal with severe pain daily even with the LDN and methotrexate. I think it’s a combination of my Sjogren’s arthritis, severe osteoarthritis, and my hypermobile joints.

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Profile picture for ginger55 @ginger55

Has anyone used LDN to treat SJOGRENS?I am fearful of using prescribed PLAQUENILbecause it gave me severe migraines,

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Hi, @ginger55, glad to sing the paises of LDN. If you any lessining of the immune system give it a try. I know it works great for diarrhea and Crohn's. I was already on it when I found a doc that knew enough about Sjogren's to diagnose it so it would be hard to tell what effect LDN had on the Sjogren's. I know it was resposible for healing my small intestine. And that is enough reason for me.

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Profile picture for josmio @josmio

Hi. I have Sjogren’s disease but I was started on LDN before the neuroblock was placed for my TN. I suffer from different types of neuropathy with this Sjogren’s disease. The explanation that I was given by my pain/anesthesia specialist is that my nerves are in haywire and it will help the neuroblock to work well.
I do still deal with severe pain daily even with the LDN and methotrexate. I think it’s a combination of my Sjogren’s arthritis, severe osteoarthritis, and my hypermobile joints.

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@josmio Sorry for your pain and I can truly empathize. I wonder if you have had a bad reaction of any negative side effects ,with your taking methotrexate, since my rheumatologist suggested this med in place of Plaquenil, which gave me severe migraines? The pitfall of most meds are in addition to the so called ' benefits', there is always a negative side effect which varies with each invidual body chemistry.

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Profile picture for suetex @suetex

Hi, @ginger55, glad to sing the paises of LDN. If you any lessining of the immune system give it a try. I know it works great for diarrhea and Crohn's. I was already on it when I found a doc that knew enough about Sjogren's to diagnose it so it would be hard to tell what effect LDN had on the Sjogren's. I know it was resposible for healing my small intestine. And that is enough reason for me.

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@suetex Thank you for your response. I started on 1.5, mg, LDN, then a week later 3 mg, then the third week 4.5 mg which proved very horrific as it gave me NO ENERGY at all and could not function, I then reverted back for a month to 3 mg, which was better but eventually gave me headaches and stomach aches. So I wondered which quantity of LDN you were on.?? I think the amount should be elevated slowly, as the body needs adjustment. So glad to hear your small intestine was healed with LDN, which makes me feel more positive about sticking it out and be patient.

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Profile picture for josmio @josmio

Hi. I have Sjogren’s disease but I was started on LDN before the neuroblock was placed for my TN. I suffer from different types of neuropathy with this Sjogren’s disease. The explanation that I was given by my pain/anesthesia specialist is that my nerves are in haywire and it will help the neuroblock to work well.
I do still deal with severe pain daily even with the LDN and methotrexate. I think it’s a combination of my Sjogren’s arthritis, severe osteoarthritis, and my hypermobile joints.

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@josmio
Ldn gave me a boost- it wasnt sustaining...placebo effect maybe???

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Profile picture for susanfrei @susanfrei

@josmio
Ldn gave me a boost- it wasnt sustaining...placebo effect maybe???

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@susanfrei
LDN lessened the strength and duration of pain from TN. I also had less pain from my neuropathy but not from muscular pain or some of my joints since I suffer from other diseases that I had mentioned.
I hope that you get more help for your own pain and get relief. It’s very difficult just getting out of bed at times especially doing daily activities. Take care.

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Profile picture for ginger55 @ginger55

Has anyone used LDN to treat SJOGRENS?I am fearful of using prescribed PLAQUENILbecause it gave me severe migraines,

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I was on 2 mg and that is what healed my small intestine, (very small ulcers, very painful). My Nuerologist wanted me to increase the dose, but when I tried I couldn't tell any difference, so why bother? So I contenued like that for years even discouteuing my sufasalanene without incedent. Then I started to have diarhhea, but it didn't seem like my Crohn's. Then I went to 4 mg and all better, like turning a switch. So that is what I take now. I will report all this to my doc. Interested in his take on it. I have had no negetive reports to make.

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