Ldn and sjogren

I have taken several different meds to help with pain & dryness... I am with  lia, does LDN (never heard of, until today) work on severe dryness? Also, is this med habit forming?

Does it help with dryness?

Hi brenwag, I can see where you're going with the question about dependence on LDN. However, I don't think you need to be concerned about this. When administered in full dosage to treat alcohol cravings it works via a completely different route from benzos and similar stuff. No connection whatever.

My dr said it may help with dryness.  Dryness is one of my main complaints with ss so I hope so.  I don't think I've been on it long enough to see if it will have any effect on dryness

 

My dr said it may help with dryness. Dryness is my chief complaint with ss so I hope that it will.  I will have to be on  it longer to say if it does or not

Hi alagoldone, I suspect you might be in the US. Not in Europe in any case. I do know full-dose naltrexone can't be prescribed under the UK health service, but it is medically approved for use, so patients can have it if they're prepared to pay through the nose for a private prescription. I'm guessing LDN is treated the same way.

I have a feeling it isn't even approved here in Belgium. It's certainly not reimbursable under our health service, but then we don't have to go through the scam of private prescriptions to get non-reimbursable drugs. There's a similar drug called nalmefen (spelling?) that is available under our health service here, and possibly in the UK, but I've heard it isn't as effective for alcohol cravings. I'm wondering whether that one can be used in low-dose as well.

My interest in this whole idea is due to a flare-up of muscle and tendon pain that's really been getting to me the last few months. I don't want to go on hydroxyquinolone so am thinking about asking my doctor about LDN.

I'm glad to hear you're feeling better. It would be great if you, and anyone else who's taking LDN, could give us all regular updates.

Thank you... I worry about becoming too dependent on meds... I had an issue with meds years ago, I suffer from endometriosis so severely (had several surgeries because of it) my doctor put me on loritab & it took months to wean me off, so I worry about habit forming meds... I take pilocarpine for dryness (was on cemeviline) but none seem to help, pilot works better, but not much.... I am having such a difficult time... I will ask my doc about LDN to see if I can take it (I have heart problems) thanks again 

yes dryness is my main problem with sjogrens. It's effecting my organs... thanks

Goodness, that's hydrocodone. No wonder you got hooked!

Hello, I will be happy to give updates on LDN and I am in the US.  I also have joint pain and lower back pain and have had it for years even before I knew I had ss.   The last 2 days have been the best 2 days of relief from pain.  All the pain is not gone but I am not reaching for whatever I can take to try and get some relief.  I did change to a rheumy that specialized in Sjogrens, so I don't no if this is beneficial

 I know.... I was fortunate that I did not have to go through withdrawal treatment, like some do but it was quite difficult & scary at the same time... I have never found a reliable, good neurologist or rheumatologist (I have even had difficulty with gynecologists - maybe it's because of where I live!?!) but I have a wonderful cardiologist. He knows more about rheumatology then my rheumatologist (if only he would listen) 

I would love to have a break from pain..... the pain in my legs is so horrible that it has caused me to walk differently, which now has done damage to my knees & hip.... I too, would love to hear more when you learn / experience more...

Hi Brenwag68!

Is the pain in your legs due to neuropathy? I'm finding out that it's prevalent in SS. I've been suffering from it for the last 2 months. It was so bad in one leg that I couldn't put any weight on it.

My doctor put me on gabapentin and it has helped a lot.

Yes, I do have neuropathy as well as raynauds. I was on gabapentin for many years, they kept increasing it but it stopped working so for the past year I have been taking nothing. The result is severe pain, making it difficult walking. I use a cane now off & on for the past year & a half (I'm only in my 40's) so it makes it difficult to deal with, but you do what you have to. I'm glad that gabapentin works for you, I know it doesn't for a lot of people. Take care

Hi alagoldone,

Besides LDN are you on other meds like Lyrica/Gabapentin, Pilocarpine, Tramadol/Ultram? Wouldn't it be cool if the LDN worked so well that you could drop all the other drugs!!!!

Is there a recommended length of time one can stay on LDN?

Hey Meg

I didn't tolerate Plaquenil very well never was able to take a full dosage, I take half of a pill, my new dr said this is fine and he added Quinicrine (sp) to take along with plaquenil.   Every drug for pain none to man, I have terribel side effects, so I hadn't been on anything for the joint point just otc, and was in pain everyday.  He added pilocarpine, but I don't really have the dry mouth bad, so I haven't filled this.  I use restasis for eyes.  He didn't say how long but my doctor has wrote a research paper on LDN that he was kind enough to send to me.  Can I say his name here, and you can google him and read his research paper.   Hope this helps

Sounds interesting. 

For our education I'm sure you can post the Title of the LDN article here, the source (ie. name of academic Journal, date of publication and page numbers) and the Authors of the article. That should do it!

I look forward to reading it.

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain

Authors

Authors and affiliations

Jarred YoungerEmail author

Luke Parkitny

David McLain

Thanks for that. I'll look it up.

Thanks alagoldone. I'll be try and source that article.

Found it straight up. Reading it now!

Interesting read. It's a pity that some researchers don't do large RCT's (randomised controlled trial) to help validate the usage of LDN so it can be approved for administration without it being off-label. 

There's a woman in my in-person group who found a neurologist attentive to SS after she gave up on local rheumo. The neurologist put her on LDN. Am hoping both in f us make it to next meeting as I'm very curious.

Hello, I happen to have Sjogren and Hashimoto. I am in the US. However, finding a doctor who will accept to prescribe LDN is almost impossible. All I came up with are 'integrative medecine' specialist which are not covered by health insurance. Is there any chance your doctor is in the NYC/NJ area? (that would be saving my life and end a lot of frustrations). Thank you so much

Hello,

I am so sorry but I am actually in Alabama, but thats funny because I am originally from NYC.   Wish I could help

Thank you