LDN for Lupus

[Da_vinci]

Hello everyone, I hope this words finds you well.

I have SLE, and throughout this summer I have been feeling tiredness, high blood pressure, headaches and migraines, joints aches, back pain, stiffness and pf course a lack of motivation and energy.

I read about a new medication, it is called LDN (low doses of Naltrexone) I have been reading about it but even though someone with Lupus has recommended me and has told me that she got an amazing improvement in every way, I still would like to ask you if there’s anyone here using it as a treatment.

Thank you all.

Best wishes for you all.

[MusicalFurbaby]

I have never heard of that, but as always, I’m way curious to hear from others about this! I love hearing about new treatment options!

[AgedCrone in reply to MusicalFurbaby]

Just looked up Naltrexone/LDN ….on the National MS Society site.Doesn’t exactly sound too user friendly does it ?

Side effects and risksNaltrexone can cause liver damage, but it is most often seen at high doses and not the low dose. Other side effects include nausea, vomiting, abdominal pain, decreased appetite, constipation, headache, fatigue, insomnia, dizziness, depression and anxiety. Serious side effects that should be reported right away to a healthcare provider include confusion, hallucinations, blurred vision and severe vomiting or diarrhoea.

No wonder doctors aren’t too keen to discuss it.

[Da_vinci in reply to AgedCrone]

Well, honestly I have been dealing with most of those symptoms you had mentioned before, my medication at the beginning of Lupus was Hidroxychloroquine, prednisone, losartan, almodipine, lansoprazol, chemotherapy, atorvastatin, lasix, carvedilol and pain killers. Today, I am on Hidroxychloroquine, prednisone, losartan and lansoprazol; some times I feel nausea, abdominal pain for no reason, my eyes view has been compromised by the use of Hidroxychloroquine, sometimes I could have diarrhoea, migraines, painful joints and low back and even though I am on those tablets I can’t run away from its side effects possible mixed with Lupus.

Last time at the drs, he offered me to use Azathioprine which side effects are very similar to LDN; side effects like affecting the liver, bleeding, nausea diarrhoea among others. I try it as the dr recommend me to but the migraines went worse so I stopped it.

My search now is to find some medication that really helps me to deal with the main problem and avoid as much side effects as possible. Is not easy I know but it can’t be impossible either.

I will keep posting all the information related and I hope that helps someone else who feels the same.

Enjoy your weekend, have a great Friday.

Best wishes for you all.

[EOLHPC]

Good question. I’ve been wanting to try this too…as a general wide spectrum analgesic but especially for my spine pain + pain associated with the severe Raynaud’s Ischemia Reperfusion Injury in my feet caused by infant onset lupus progressively debilitation peripheral nerves & vascular system. My neurologist wouldn’t even discuss it, my GP claims she has never heard of it, but I’ve been asking about LDN here (been here 10+ years, but can’t recall finding anyone here on LDN) & on several of my other good U.K. support group org forums (EDS U.K. & GIFTUK) which has given me a relatively strong understanding of when & how this is prescribed in the U.K. ( ie almost never).

Also been asking the consultants in my Spine MDT (Ortho Spine surgeon & Anaesthetist Pain Consultant) about it & my impression is the LDN is not prescribed on the NHS mainly because it’s licensed for anything but addictions &/or MS, AIDS etc but can only be used off-license for cases like ours +, of course, we are in the middle of a paradigm policy shift of NHS policy on analgesics which is making all medics extra jittery about prescribing anything unlicensed

Will add 2 links below: to a NHS LDN info sheet + link to a 2022 retrospective study explain (you’ve probably found these already, but maybe others following your post will be interested?)

So, thanks for posting…am hoping your discussion helps me learn more about the NHS position on LDN for SLE patients 👍🤞🍀 Coco

[EOLHPC in reply to EOLHPC]

PS what I HAVE managed to be prescribed is Naloxegol (Moventig) off-licence…but so far am dodging actually trying it out:

westessexccg.nhs.uk/your-he...

My main need for analgesics is a lot of big lifelong spine issues which became more acute in my 60s requiring major surgery which was only partially successful (I had to recover from that with only paracetamol because my infant onset SLE + hEDS have caused v early onset chronic mouth to exit slow GI transit which has progressed into CIPO (chronic intestinal pseudo obstruction) which makes me extremely prone to acute high bowel blockages in response to all classes of analgesics 🤷🏼‍♀️

[Da_vinci in reply to EOLHPC]

Thanks a lot for all this valuable information, I will read it tonight at home, I am not sure yet about this treatment as I can not find much information related to SLE Lupus patients. My neighbour it’s about to put me in touch with this person who is using LDN.

Her Lupus has been great after the treatment, apparently she only takes 1 tablet a day and she says she feels lot better.

I’d like to meet her in person as I have lot of questions about the treatment.

I wrote a email to The Burghwood Clinic as they prescribed the medication after a consultation with one of their drs.

Apparently this drug works effectively with Lupus, but as we know, Lupus is different in everyone so it’ll be better to get more information about before trying it.

I’ll post anything I found so it could help many others in this Lupus Life we got.

Thanks again for your help and time.

Best wishes for you all.

[EOLHPC in reply to Da_vinci]

Thanks again: am so glad you posted & I hope you’ll let us know what you find out. It’s great you’ve got a chance to contact this LDN-experienced lupus patient! But, yes, you’re right: each lupus case is v individual. You’re v welcome: am always happy when something I offer up can be useful here ❣️

[Da_vinci in reply to EOLHPC]

I will let you know when I get in touch with the person using it.

I am looking for alternatives that works but most important is, I want to see and meet the people using that treatment so I would be able to ask and hear others experiences related to this drug.

I am happy to find support and good people in here. 😊 🤗 thanks 🙏🏻 It is a pleasure to meet you.

My best wishes for you all.

[EOLHPC in reply to EOLHPC]

nhs.uk/ipgmedia/national/mu...

[EOLHPC in reply to EOLHPC]

futuremedicine.com/doi/10.2...

[Betty909090]

This drug is actually an opioid (opiate) antagonist to “cure” opiate drug addiction. It acts on opioid receptors in the brain. It’s normally prescribed for alcohol, opioid and other forms of drug addiction!

Licensed in 1984 to treat drug addiction but still very experimental for lupus:

Docs do not fully understand how it works for lupus.

Be careful with fashion and hype!?👆

“There are a wide range of diseases LDN can help with, and many clinicians will find it difficult to understand how one drug can have a positive effect on all these pathologies.

How Low Dose Naltrexone (LDN) Works – Updated 2021 with the latest information

The History, Pharmacology and Mechanism of action of Low Dose Naltrexone (LDN)

Understanding how LDN works requires a grasp of three fundamental biological principles…” etc etc.

originalText

“…Naltrexone, taken at the full dose of 200mg daily, has been licensed for use for the treatment of addictions since 1984. (5) It is currently used for both opiate and alcohol addiction, as a full dose is able to completely block endogenous (endorphins released by the brain) and exogenous (recreational drugs such as heroin) opiates. In the licensed dose, it is used as an oral tablet, a long-acting injection, and as an additive in painkillers to prevent them from being abused. (5)…”

originalText

ldnresearchtrust.org/what-i...

[Da_vinci in reply to Betty909090]

I found this information, apparently it has been used with Lupus patients with good results, yet I would like to dig a bit more to get more information about it.

Ldnresearchtrust.org

ldnresearchtrust.org/how-lo...

[Allingham60]

Hi, I have tried LDN for my muscle / joint and fibromyalgia type pain (I have Sogren's Syndrome.) I started very low at 1.5 mg and moved up to 4.5 mg per day. I took it for 6 months but gave up as it did not help my pain at all. However, I believe some people can gain considerable relief from it and maybe a slightly higher dose might be more effective.

I purchased my LDN from Dicksons of Glasgow (Chemis) as GPs don't usually prescribe it.

[Da_vinci in reply to Allingham60]

Thanks a lot for your reply and sharing your experience with LDN, it helps a lot in order to know better about this drug and the potential benefits. I will keep inquiring about this and once I get more information I will share it.Thanks a lot

[AgedCrone]

Look on the MS site…you will probably find people there who have written about LDN

[GrandMAptm]

I also was interested in using LDN to help with the pain associated with my conditions. I asked my rheumatologist (here in the U.S.) if he has ever prescribed it and he said no. Here is an interesting article that I found back when I was doing some research into it. ncbi.nlm.nih.gov/pmc/articl...

[NRMorris]

I have been taking it for several years and find it has helped. It’s taken at very low doses hence the low dose naltrexone. I have mine posted from from the pharmacy in Glasgow called Dixons on prescription. Look up Steven Dixon and the LDN forum.He explains this medication in great detail. I am not advocating anyone should take it as I do, we are all different but I suggest you research it first as I did.

[Da_vinci in reply to NRMorris]

Thank you, I appreciate it. I am still collecting information about this.