Please let me know if someone is using LDN

Posted by giova @giova, 3 days ago

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!

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I also wanted it for limited diffuse scleroderma and was able to order it online at first since my rheumatologist didn't want to prescribe it. After seeing improvements in my hand stiffness and skin he now has. However, my insurance won't cover it so I'm continuing to buy it online as it's less expensive than my local pharmacy.

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I take LDN. The initial doctor who prescribed it was Dr Lisa Witkins in NYC (NY Presbyterian), a pain management specialist recommended by my rheumatologist. Now my rheumatologist is prescribing it herself (Dr Wejia Yuan - also in Manhattan), and I get it in the mail via a compounding pharmacy. It isn’t covered by insurance, so I try to at least get two months to cut back on shipping costs.

My rheumatologist wanted me to try it in addition to the Methotrexate and Cosentyx as she mentioned it’s used in Europe successfully as an anti-inflammatory and thought it might help. I figured I have nothing to lose, and I’ll give it a few more months. Best of luck!

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Visit website Ldnresearch trust.org for a wealth of information, prescribing doctors and compounding pharmacies. Also of interest is LDN radio show podcast. Linda Elsegood is the author of several books on the subject of LDN as a treatment for many conditions, especially autoimmune related.

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@arlenelmh

I also wanted it for limited diffuse scleroderma and was able to order it online at first since my rheumatologist didn't want to prescribe it. After seeing improvements in my hand stiffness and skin he now has. However, my insurance won't cover it so I'm continuing to buy it online as it's less expensive than my local pharmacy.

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I have used it from mid 2019 for Crohn's and other (at that time) immune diseases. I wholeheartedly endorse it You will have to find a doc (primary or rheumatologist is good) to carry the script. Or have your doc to realise that the ammount you need isn't harmful. (The tack that my rheummy took. She wanted to see me happy.) I take 2 mg. Good luck!

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I'm getting it for the first time for chronic fatique symptoms. I'm also interested on what it has done or not done for folks. How much do people pay for a 30 day prescription or do you get more at one time?

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@arlenelmh

I also wanted it for limited diffuse scleroderma and was able to order it online at first since my rheumatologist didn't want to prescribe it. After seeing improvements in my hand stiffness and skin he now has. However, my insurance won't cover it so I'm continuing to buy it online as it's less expensive than my local pharmacy.

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What is the dosage and how much are you paying? I'm getting it for the first time.

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I started at 1.5 mg at bedtime. Then 3 mg. After 20 days I'm at 4.5 mg. The first 3 mo were $25 a month. Looks like it will be $35 a month moving forward.

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@dahk

I'm getting it for the first time for chronic fatique symptoms. I'm also interested on what it has done or not done for folks. How much do people pay for a 30 day prescription or do you get more at one time?

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I think my last script was about $66 plus shipping (I'm on 6mg). I fill two months at a time so I'm only paying for shipping 6 times a year instead of 12. Pills tend to be less expensive than capsules. Not sure if it's helping as I take a number of other drugs, but my rheumatologist wanted me to add it and I'm at the point that I'll try anything if it might help!

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