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Doctors resist prescribing LDN
I've read posts in this support group about the success that patients have had with using LDN to reduce/eliminate Prednisone usage. I'm currently on 8 mg./day (down from 60 mg. in late July). I started getting body aches again at this 8 mg. dosage, but they are tolerable. I don't want to increase my prednisone. I asked my rheumatologist if she would prescribe LDN to me. She informed me that they do not prescribe LDN, but I am welcome to try it. She told me to ask my PCP. I asked my PCP and she wouldn't prescribe it either. How did you convince your doctor to prescribe LDN?
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Both my PCP and Rheumatologist were positive about LDN. Since these doses have to be compounded I went on the internet and ordered them. Cost is about 30.00/month.
Both carefirst specialty pharmacy and ageless RX offer this and I have used both. They have a Dr you zoom with to get a prescription. I am starting with 1.5 mg and working my way up to 4.5 over the period of 1 month.
Along with methotrexate it is helping me taper quicker . Too soon to see if it is helping yet or not.
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5 ReactionsPlease keep us posted on whether it is helpful. My docs won't prescribe it either. But if I keep seeing anecdotal confirmation that it is indeed helpful, I'm going to push for it.
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4 Reactions@ropnrose is LDN low dose Naltrexone?
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2 ReactionsYes, it is.
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2 Reactions@ropnrose thank you!
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1 ReactionYes
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1 ReactionI am using LDN for Sjogrens and Vasculitis neuropathy and it is like a MIRACLE how good it is! But I am in the UK and here they do use this for any autoimmune disease. My sister is in NY and she desperately needs a Dr to prescribe her LDN, does any of you have a Dr in New York who prescribe it? Please let me know!
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4 ReactionsI have been using LDN for about a year now. I can say with certainty that it has improved my sleep quality, to a point that it's better than it was pre PMR. In fact, I'm sleeping like I did in my twenties. That, in turn, (along with a monthly biologic infusion) has helped me taper down to my current 0.5 mg - at my current rate I will be down to zero within a month! I can't believe I feel so good again.
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4 Reactions@pdxmac
Totally agree and sleep is essential!
@pdxmac
I hope you continue to have good luck with the medical regimen you are currently doing.
I don't know how prednisone earned a reputation for being the "only option" for PMR/GCA. As the GiACTA study showed, prednisone "failed to induce remission" in the majority of GCA patients after one year of treatment. In my personal experience, I had countless PMR flares while I was taking prednisone but no flares of PMR since I started Actemra.
My PMR flares on prednisone happened regardless of how slowly I tapered my dose. I never intended to take prednisone for the rest of my life. I only signed up for a year or two.
https://www.the-rheumatologist.org/article/trial-data-reveals-the-limitations-of-steroids-in-giant-cell-arteritis-therapy/
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The fast pain relief from prednisone is good. Preserving one's vision with prednisone is good but some other medication might be needed for a sustained remission. I think there is room for improvement with the treatment with IL-6 inhibitors but at least there is progress being made. Maybe LDN is a good adjunct to an IL-6 inhibitor.